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Making Sense of PDA


The current view of PDA is that it is an anxiety driven need to remain in control.

Research into PDA is still in its infancy and there are many ongoing questions around PDA.  One of these has been around whether PDA is in fact anxiety driven.

Anxiety has many and varied presentations, some of which are invisible, many of which are misunderstood. 

We sometimes refer to anxiety as though it’s definition is a universally accepted truth. 

But anxiety can be seen in many forms and the way we understand it, makes a big difference to how insightful and compassionate we are in navigating it.


When we look at anxiety through a Polyvagal lens, it becomes much clearer and for me most fully applicable to PDA. 

Through a Polyvagal lens, anxiety is; an overactive neuroception system. 


Overactive or highly sensitive neuroception is not faulty cognition, it is a filter through which information is sent from the body to the brain. 

It powerfully determines which autonomic pathway is activated and this determines the response that is generated. 

When we talk about differently wired brains and start to become really curious about the neuroscience of PDA, we come face to face with how a brain wired for protection can present.

Protective responses in the form of the Five Fs, have been set out in one of my earlier articles here:

https://pathologicaldemandavoidanceaprofileofautism.com/2019/06/25/pda-neuroception-the-five-fs/

This article is just the tip of the iceberg though.  In it, I explore how the nervous system is constantly working hard in the background, out of our awareness, determining our autonomic state.   This is governed by what Stephen Porges refers to as Neuroception; our nervous system’s threat detection system. 




I hypothesised in my article linked above that highly sensitive Neuroception may be at the heart of PDA, which I absolutely believe it to be.  This article only covers the very early stages of this area of enquiry however, and needs to be quite considerably expanded in order to present all of the layers required for a neurobiological formulation of PDA.

To build such a formulation, we need to explore and understand the autonomic nervous system in greater depth and the way it relates to Autism and PDA. 

One of the key benefits of doing this, is that it allows us to start to build a respectful friendship with our own autonomic nervous system, and crucially to see, feel and experience how interconnected our nervous systems are.

Understanding how our own nervous system communicates with our child’s, can be and for us has been, deeply important.  I am working away on writing about this in a much more detailed piece of work, which I hope to update you on in the near future.
PDA, as a profile of Autism, is multifaceted and complex.  Many expressions of PDA can be understood as being in pursuit of safety.




In mainstream society our personal freedom, autonomy and agency is threatened every day, many times a day. 


This happens even more frequently for children. 


For those with an anxiety driven need for control, some of these ‘threats’ are packaged in the form of everyday demands.

Demands is a very broad term that needs to be unpacked and made sense of on an individual basis.

The PDA Autistic response to demands is akin to a person’s survival response to fear.  It is being driven by a neuroception of threat.

Understanding the Autonomic Nervous system (ANS) is so important in helping us to support Autistic children to feel safer in a demanding world.

Effective support also hinges on a reliable understanding of Autism.



I highly recommend reading the following two articles as part of reflecting on our understanding of what it is to be Autistic.

https://theautisticadvocate.com/2019/03/what-is-autism/

And

https://neurocosmopolitanism.com/what-is-autism/


For updates and further information, the Facebook page supporting this blog is : https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

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No First Day At School Picture

Indirectly, society, my friends and family, Facebook and my conditioning, are all telling me, that I should be sad today. I should be sad that my son should be starting his first day at school today and that he is not.

I sense the eyes of onlookers. I hear the whispers of concern. I am aware of others values and beliefs.

Many of these values and beliefs were previously shared by me too. Before I needed to really examine them, that is.

This week I have asked myself whether I feel upset or envious as I see the children pass by our window on their way to school, or by the many photos on my news feed of children in their pristine school uniforms standing by their front doors?

Have I felt upset this week, despite this armour I often feel the need to wear?

My truth is actually somewhat different to this. As I sit here watching my son learning through play with his new, PDA informed, tutor, in our home; I feel relieved, I feel reassured and I feel immense gratitude.

Perhaps you’ll consider this aberrant? Some of you will I’m sure. But I know there will also be many of you that follow my page who will absolutely get this.

My feelings are informed by a stark understanding about the extent to which our son’s daily battleground of sensory, social and everyday demands, affects him. It is very much informed by the knowledge of how much more unbearably intense all of this would be for him; in a classroom environment. I feel thankful that this knowledge is deeply integrated into my understanding of, and my connection with, my son. I know, that by not sending our child off to school, our highly sensitive 4 year old will not have to endure a painful and overwhelming environment everyday, something he simply could not cope with.

I have observed how immensely damaging structured groups are to the very core of our son’s being. I have been his safe space every time we have returned home and he is exhausted after being bombarded with demands. I am always the one who is there when he can’t hold on any more and his distress tumbles out.

I am also with him everyday as he struggles to manage even very low – demand schedules, let alone the complex environment of school.

I know the irreparable damage that would be caused to my son’s mental health, if we ignored all of the evidence he has shown us, of which there is so much.

In a week when I am expected to feel some sadness, I most predominantly feel immense gratitude. Gratitude that my son has been able to unequivocally communicate to us what he needs. I feel thankful that his needs have also been assessed and reported on by some key professionals. I feel thankful that we have a specialist assessment report that recommends a non school based education. I feel thankful that we have been able to really hear our son and reflect on the journey that we have already been on as a family. I also feel immense gratitude for all those who have helped us to gain this understanding of his identity.

I won’t deceive you though. It would be incredibly misleading if I was to give the impression that I am so assured in all of this, that I don’t feel incredibly vulnerable with this, every single day. Calving out a different path is daunting, challenging and exhausting. I am constantly trying to learn to lean into the vulnerability, to have the courage to trust the process and most importantly; to provide my son with the space he needs to be who he is, and the freedom to learn on his terms.

None of this is easy, I am not good with feeling vulnerable, I need a high level of safety and control too. But many of you will relate to how there is an incredibly powerful force involved in becoming a Parent. For me, this force has actually been the most growthful and positive of my life.

Together, my boy, we can and we will figure this out.

If you like this page, you may want to visit the accompanying Facebook too:

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Can We Just Mute All This White Noise For A Moment?

In the peace and quiet, when I am attuned and connected to you, my child, I am sure, I am confident and I know what you need.

In the peace and quiet, when I am not repeating in my mind all the what if questions I have heard this week, I am clear, I am enough and everything is going to be okay.

In the peace and quiet, when I am not making comparisons to other children, to my own childhood, to my own parents, I can see the path, I can see your strength and I trust your direction.

In the peace and quiet, when I am not been triggered into feeling I am not good enough, strong enough or smart enough, I see you, all that you are and all that your are learning.

In the peace and quiet, when all the white noise around me ceases, I am able to trust that you will learn and grow, exactly as you need to and at the pace that meets your needs.

In the peace and quiet, I can breathe, I can believe and I can facilitate as you lead.

In the peace and quiet I know our plan, this different one that you are showing me, the one I didn’t even know was there.

In the peace and quiet, I give such thanks for you, my boy, my spirited, strong and autonomous son and I am open to all the adventures, growth and new ground we have ahead of us.

If you like this page, you may want to visit the accompanying Facebook too:

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Intrinsic Motivation and PDA: A Week Full of Rich Narratives From Autistic PDA Adults

Kristy Forbes – Autism & Neurodiversity Support Specialist and Fan from Roarheart, provide so much insight in their amazing new podcasts @FightandFawn. I value the content of what they are sharing very much.

I wanted to take a moment to highlight one of the points they make about Education. They highlight the importance of providing our children with the space to find their own talents, gifts and strengths; by giving them the freedom to learn in their own way. They identify the central role of intrinsic motivation in children’s learning (and life) journeys and why this is effective, where imposed expectations and extrinsic motivation are not.

When I had finished listening, I reminded myself of the seven factors that can enhance intrinsic motivation. They are challenge, curiosity, control, fantasy, competition, cooperation and recognition. When reflecting on those seven factors in relation to PDA, I was struck by the fact that each word is not only a factor that enhances intrinsic motivation, but also a word that describes factors that are important to many Autistic people with the PDA profile. A transferable list if you will.

When we really start to respect how these factors link in with our children’s different neurology, we become more able to appreciate why we simply cannot impose our own agendas. All of our conditioned ideas about what children “need to be doing” “should be learning” “have to adhere to” get in the way of parenting our children in the way they need to be parented. When we impose our own anxieties about what learning should look like, we unintentionally cause our children distress. It also only serves to decrease their freedom to learn.

None of this is easy, especially because it sets us off on a path that very few others will be travelling around us. It can feel lonely and it may also feel counter-intuitive at times (depending on your own neurology). But for our children’s very unique needs and for the sake of their mental health, understanding these factors is so very helpful.

In the Q&A With Harry Thompson and Mollie Sherwin this week similar themes were also touched on.

Harry and Mollie provided clarity about how, when we push and try to move our children in a direction that we deem most appropriate; feelings of panic and threat are highly likely to set in. This will naturally drive our children to go in any other direction than the one we are signposting. Harry and Mollie talked about the importance of finding shared direction and establishing equal footing.

Harry also suggested that instead of looking at how we can stop behavior that we wish to extinguish, we focus on what is happening when our children are happy. If we become detectives when their anxiety is low and examine how and why the positive experiences occur – we have a much better chance of building on these positives. By focusing on what is working we can ensure that these factors are then prioritized in order to support and empower our children’s well being.

Thank you to Harry, Mollie, Kristen and Fan for so much great information 💛💛

If you like this page, you may want to visit the accompanying Facebook too:

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Highly Sensitive Neuroception May Be At The Heart of PDA

In this article I hope to describe how Dr Stephen Porges’s theory of Neuroception has helped us, as Parents, to develop greater insight into what might be happening for our Autistic son when he is faced with “demands”. This will provide a context for my hypothesis that:

Highly sensitive Neuroception may be at the heart of PDA

This exploration will also cover the known and lesser known survival responses, which I refer to as the Five Fs: Freeze, Flight, Fight, Fright and Fawn.

When PDA is diagnosed, it is specified as a profile of Autism.  There is significant variance in recognition throughout the UK and in the wording used by different clinicians.  Some clinicians will name ASD with Extreme Demand Avoidance, others refer to Pathological Demand Avoidance: A Profile of Autism, whilst some remain true to Elizabeth Newson’s original wording and retain the word “syndrome” at the end of PDA.  The following links contain clarity in respect of the key diagnostic features:

https://pdaguidance.wordpress.com/pda-diagnostic-criteria/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820467/

Since suspecting that our son was Autistic, I have been passionately researching about Autism. It became apparent to me very early on that understanding the autonomic nervous system was likely to be fundamental to understanding our son.  In 2017 a specialist, independent OT helped us to think about the role of the nervous system in relation to William’s gross motor delay and his sensory modulation difficulties.  Since then, my curiousity about the role of the autonomic nervous system in Autistic people, has led me to read some really interesting research and to then consider this, more specifically, in relation to Pathological Demand Avoidance.

“Demands” in the context of PDA can mean anything from showering, getting dressed, using a pencil, making a choice, to going somewhere or doing something of interest.  We see in William that even the most innocuous of demands, direct and indirect can be challenging.

As apparent as William’s extreme avoidance of every day demands is, it is even more evident that he is triggered into “survival” mode; whenever the environmental conditions challenge his highly sensitive nervous system and whenever our, or other people’s responses to him deviate from being entirely calm and demand free. All of this is further impacted by his sensory modulation difficulties and auditory hypersensitivy.

Prior to being diagnosed as autistic, at 2 years old, William’s Consultant Neurologist diagnosed Congenital Central Hypotonia and Hypermobility, with some Stereotypies. When the Neurologist discussed William’s diagnoses with us he explained that “central” referred to the brain and that in some children like William, their MRIs showed delayed myelination. With this in mind, I became increasingly curious about how his nervous system might also be involved in his highly sensitive and frequently fearful responses to objectively, non threatening stimuli, such as everyday demands.  These fearful responses also include more predictably challenging stimuli such as; deep laughs, thunder and certain tones of voice. Porges refers to these as “lower pitch sounds” which the sensitive nervous system is more likely to be biased towards “in order to detect the movements of a predator”. (Porges, 2017)

Extremely high levels of anxiety associated with Autism and in particular the PDA profile of Autism, can present as “bouncing” from one extreme behaviour to another. This is frequently referred to as “lability of mood” and also “challenging behaviour”. In many settings the child themselves, the parenting, or both are blamed. However, what is observable is only a small part of the picture and much needed clarity and understanding can be found in the literature on Neuroception.

Neuroception is how our neural circuits distinguish whether situations or people are safe, dangerous, or life threatening. If our neural circuits perceive a threat; the principal human defence strategies are triggered. (Porges, 2004)




The term Neuroception and its history of origin provides a fascinating story that struck me as being directly relevant to PDA.  Stephen Porges, who coined the phrase Neuroception, writes about his own personal experience of it’s powerful impact when his body’s response to an MRI was incompatible with his cognitive desire to experience one. As a scientist and academic, he was so interested to experience the process of an MRI scan, yet he became unable to do so because his Neuroception triggered the flight response.

“I wanted to have the MRI. I wasn’t scared. It wasn’t dangerous. But something happened to my body when I entered the MRI. There were certain cues that my nervous system was detecting, and those cues triggered a defensiveness – wanting me to mobilize, to get out of there.” (Porges, 2017)

Neuroception evaluates risk in the environment without awareness. Perception is a conscious and aware process of evaluating or detecting risk. The difference between the two is crucial to understand, as it links directly to the question of intentionality and behavioural control.

“When we encounter challenging behaviors in a child, the first question to ask is: Is the behavior’s etiology top down or bottom up? … I came to understand the importance of … considering the child’s reflexive responses to perceived threat … as I was fortunate enough to learn about Dr Porges’s work” (Delahooke, M. 2019)

Because Neuroception is a neural, rather than cognitive process; when the nervous system detects threats, it does so unconsciously; “triggering the body to engage defensively” (Porges, 2017). This means that when triggered to mobilize (flight or fight) or immobilize (freeze or fright), the body is not choosing to react as it does, rather it is compelled to do so for it’s very survival. This ‘override’ occurs even if the escaped or avoided stimuli or event, is something that the person wants to do.

Understanding this neural process for the first time was a huge light bulb moment for me. Porges’s theory inadvertently, further explains the “Can’t – Help – Wont” aspect of PDA; a phrase coined by Jane Sherwin (2015). It explains the neural process which drives a person to avoid or escape threatening stimuli, which in the case of PDA is everyday demands. Porges explains how even when the desire to do something is present, the ability to do so can be powerfully overthrown by the process of Neuroception. So in the case of an individual with PDA, we can begin to conceptualize how, when the nervous system detects threat and danger within “demands”; a survival response is triggered, facilitating a form of escape or avoidance. This may explain both the neural process and the lack of behavioural control in the “can’t help won’t” explanation, or perhaps more accurately; “can’t help can’t.”

Freeze, Flight and Fight are the three principle human defence strategies that Dr Porges refers to (2014) and Barach et al (2014) explore a fourth known as “Fright”. 


There is a fifth survival response that is less well documented. This Fifth F is known as Fawn, a term first introduced by Pete Walker. Understanding why the Fawn response is triggered and how it presents could help us to understand why some of our children’s needs remain unrecognised and unsupported for detrimental periods of time.

It may be useful to explore the first four survival responses in order, with reference to the “sequence” originally set out by Gray (1988, 2003) before finally and seperately exploring the Fifth F; Fawn.

1. The survival response Freeze is triggered when the person’s fear response to a perceived threat, takes them into a shutdown state. This can include being unable to respond to those around you, “staring” at the iPad or TV or into space in what looks like a daydream state.  It can also include falling asleep outside of normal routine, something William does when he has been overloaded with sensory, social and everyday demands.  The easily overlooked and misunderstood freeze responses, which are characteristic of a person who is feeling traumatised and overloaded, can render a child’s difficulties invisible, especially in the busy context of school.   The freeze response can also be understood as the internal process known as dissociation.  Dissociation becomes necessary in order to escape and protect the self from perceived danger.  Freeze is also referred to by clinicians as “hypervigilance (being on guard, watchful, alert)… associated with fear.  (Bracha, 2004) 

For some with the PDA profile of Autism, perceived danger, or a Neuroception of threat, is almost constant in environments where everyday demands are everywhere and complex social and sensory information is overwhelming.

2. The survival response Flight is triggered when a person responds to a perceived threat with an intense urge to flee. This flight can be literal; running away, or it can be more subtle and symbolic. An example of the latter would be when the person suddenly absorbs themselves in an activity that they are passionate about; in order to feel distanced from the perceived threat.

3. The survival response Fight is triggered when a person responds aggressively to a stimuli that is frightening to them.  This survival response overrides the individual’s connection with others and the fight responses are triggered unconsciously and unintentionally. 

Once the nervous system has calmed; feelings of shame and regret are likely to be profound, regardless of the person’s ability to verbalize these feelings”. (Newbold, 2014)

4. The survival response Fright is triggered when a person becomes completely immobilized.  As with all survival responses, immobilization is not a chosen response, rather it is a response triggered unconsciously by the neuroceptive system to safeguard.  This immobility is a “response of last resort to inescapable threat”  (Kozlowska et al, 2015) 

5. The fifth F: Fawn (Walker, 2013) is largely unrecognised. This survival response occurs as a result of prolonged high stress situations. When the fawn response is triggered, we may observe an uncharacteristic mode of “people pleasing” or deferring to the needs and wishes of others, whilst surrendering one’s own.  Fawn is a survival response that can be triggered when a person feels at risk from the people or environment they are in.  (Bal, 2009)  For example, if I am overwhelmed by something in the environment, or by the people around me my Neuroception may trigger the fawn response “which leads to compliance in order to avoid conflict”. (Bal, 2009)  Uncertainty and a lack of being able to predict whether a person or group of people may become angry if we fail to please them, is something we all weigh up. But for a person who is experiencing a Neuroception of danger, aggravated by poorly developed skills in reading facial expressions, “prosidy of voice” (Porges, 2017) and the many complex nuances involved in social interactions; the fawn response may be triggered to protect the self from the perceived harm of an unknown response.

The 5 Fs; and the very different ways in which they present, means that those with highly sensitive Neuroception or as Porges defines it; “faulty neuroception”, may present very differently in different contexts and with different people.  I have replaced Porges’s term “faulty” with “highly sensitive” as I believe that this is about a different, rather than faulty neural process.  I embrace the science of Neurological theory, but believe in the importance of avoiding “medical model” terms; such as faulty or disordered, when we can replace these with more respectful and accepting references to “difference”.  The amended wording does not alter the theory; simply the way it may be experienced by those to whom it relates.  It also does not take away from the impact of having a highly sensitive neuroception; it is possible to validate the difficulties that difference creates for the person and their loved ones, without describing something inside of a person as faulty or disordered.

The fawn response is much less likely to be triggered in an environment where the person feels safe; with a person who is well known to them. If as part of a trusting relationship, kind and gentle responses are the norm, then that person is established as predictable.  “Our nervous systems like predictable” (Porges, 2017) predictable is safe.  In safe relationships the Fawn response is much less likely to be triggered. In less well known relationships or contexts such as school or hospital, the “Fawn” response is more likely to be triggered to avoid conflict and to maintain feelings of safety until back in the refuge of home.  When a neurception of threat is detected at home with those safe adults; one of the first four survival responses are more likely to be triggered.  In relation to PDA this may translate as demands being followed for some of the time for some people in these lesser known and more difficult to predict contexts.   When the PDAer follows some demands for some people, some of the time, it can be very confusing to those around them.  These changeable responses are actually very adaptive though and do make sense when considered within the context of a Neuroception of threat.  I view this theory as one that would sit, supportively, alongside the literature on masking.

PDA is complex and presents in nuanced ways that may confuse the outsider.  When the autonomic nervous system is triggered as a result of a Neuroception of threat, we see “first line defence strategies” that are social in nature, but are actually being shaped by sympathetic nervous system activation.  William uses many of the “first-line strategies” that Jane Sherwin describes in her book including:

“Ignoring is a familiar first line of defence to avoid immediate compliance. It is as if ignoring gives … breathing space … or she may simply need time to process the request and comply, once she feels that the initial demand has been diluted by time.

Switching to a different topic in order to distract from my initial request is also a common strategy … or she may promise ‘when I’ve finished this’ or offer a list of imaginary reasons why not”.  (Sherwin, 2015)

These characteristics are very much filled with “flight”, but less recognisable as such as they include a social element.  When this stage of response is not working for the child they may move into a fight state.  As I see William’s activated state rise, I prepare to respond calmly and to provide conditions that will help disengage William’s Neuroception of threat and help him return to a Neuroception of safety.

Polyvagal Theory has implications for the kinds of conditions those with highly sensitive neuroception need in order to return to their safe and social state.  Understanding Polyvagal Theory has the potential to lead to much deeper levels of understanding of PDA and therefore more therapeutic responses from caregivers.

Exciting and pioneering work such as that of Raelene Dundon, a Clinical Psychologist who looks at PDA through a trauma informed lens is really helpful too.  I am not aware of anyone in the UK who is working therapeutcially with people who present with the PDA profile of Autism in the way Raelene is, but I would be very excited to hear from, or about, anyone who is.

“I should clarify that I am not saying that PDA is caused by trauma – I believe the current view that PDA is a profile of behaviour that presents as part of an Autism Spectrum Disorder. However, what I am saying is that the reaction an individual has to a demand is similar to a trauma response.” (Dundon, 2018)

I also see in William, in his most extreme responses to demands, the resonance of a trauma response.  The Five Fs are all responses that someone who is or has experienced trauma may have; they are responses that help protect the self from the trauma in a given situation.  If we consider PDA in these terms, we may find it easier to respond to extreme demand avoidance with the essential calm and gentle approach required.  When we hold safe space for a person, it is possible for them to return to it more quickly, rather than if we join them in their triggered space; their neuroception of threat. 

“When neuroception tells us that an environment is safe and that the people in this environment are trustworthy, our mechanisms of defense are disenabled. We can then behave in ways that encourage social engagement and positive attachment.” (Porges, 2014)



Doing this is never easy, we still struggle everyday.  But what we have found is that increasing our insight has increased our ability to authentically empathise and this has enhanced our ability to offer William the responses and environment that he needs and deserves. 

Porges’s Theory of Neuroception has also helped us to consider in more detail; the conditions we need to ensure William has beyond the home environment too, in particular the essential and non negotiable conditions that he will need in his individualised education plan.

“With that knowledge, we need to structure settings to remove sensory cues that trigger a neuroception of danger and life threat. The removal of low frequency sounds would be a good start (as well as) creat(ing) “safe zones” that trigger through neuroception a physiological state of safety” (Porges, 2017)

Understanding and applying the principles of Porges’s work to Educational and Clinical settings, in relation to PDA, could help shape crucial support and accommodations for this vulnerable group. There are exciting, empowering and hopeful messages within Porges’s work and it has great utility in terms of understanding the requisite conditions required for PDAers to feel safe enough to thrive.

I would love to hear your thoughts and feedback on the themes raised in this blog here or over on our Facebook Page

https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

References


Bal, R. (2019). “Fight Flight Freeze Fawn Responses And The Pitfalls Of Empathy” Resolving Trauma and PTSD.  Retrieved from

Fight Flight Freeze Fawn Responses and The Pitfalls of Empathy

Bracha, S. Williams, A. E. & Bracha, A. S.  (2004).  “Does ‘Fight or Flight’ Need Updating?”  Psychosomatics 45, No. 5

Delahooke, M.  (2019).  Beyond Behaviors: Using Brain Science and Compassion to Understand and Solve Children’s Behavioral Challenges.  PESI Publishing and Media.

Dundon, R.  (2018). “Supporting Children With PDA Using Play and Trauma Informed Practice”.  Retrieved from http://www.raelenedundon.com/2018/11/

Kozlowska, K. Walker, P. & Carrive, M.  (2015).  “Fear and the Defense Cascade: Clinical Implications and Management.” Harv Rev Psychiatry. 23, no. 4, 263–287.

Newbold, Y.  (2014).  The Special Parents Handbook.  Amity Books.

Newson, E. (1990).  “Pathological Demand Avoidance Syndrome: Mapping a New Entity Related to Autism?”  Inaugural lecture, University of Nottingham.

Porges, Stephen W.  (2004). “Neuroception: A Subconscious System for Detecting Threats and Safety.” ZERO TO THREE 24, no. 5 19-24

Porges, S. W.  (2017).  The Pocket Guide to The Polyvagal Theory: The Transformative Power of Feeling Safe. New York: W.W. Norton.

Sherwin, J. A.  (2015).  Pathological Demand Avoidance Syndrome: My Daughter Is Not Naughty. London: Jessica Kingsley Publishers.

Walker, P.  (2013).  Complex PTSD: From Survivng To Thriving.  CreateSpace Independent Publishing Platform.

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Improving Outcomes PDA Day 15 May 2019

I wrote this short fantasy/reflective piece before setting up on wordpress, so it just sat as an early post on my Facebook page. I decided to tweak it and put it into blog format as my focus piece for PDA Day. It is about what things could look like once provision; committed to Improving Outcomes is made available to our children. It uses this slightly quirky/ historical lens to help bring the changes that are needed into sharp focus:

PDA Day 15 May 2039

Pathological Demand Avoidance: The Power of Progress

The powerful lens that history and hindsight provides, allows us to see the full magnitude of historical failures. When we look back and reflect on the shocking conditions in which people have lived or situations where human rights have been abused, it often seems incomprehensible. We might ask how such treatment of people was ever permissible and why those in power were not held accountable? When we look back at our Education and Health Care systems for example, we feel appalled at the way in which too many children and adults were neglected or failed. We perhaps even take great comfort from knowing we don’t have to raise our children through such times.

This kind of clarity can be seen throughout history when we reflect on the experiences of many vulnerable groups. One strong example of this relates to Autistic children and adults with PDA; Pathological Demand Avoidance. Whilst this profile of Autism is widely recognised and understood in 2039, 20 years ago this was not the case. PDA was still being discredited altogether, or re formulated as a by-product of poor parenting, attachment difficulties or other similarly uninformed explanations.

Adult PDAers, the PDA Society and other committed professionals and parents, tirelessly fought for the rights of this marginalised Autistic group. These people fought to gain recognition of the strengths and difficulties of individuals with PDA so that they could be appropriately supported, understood and celebrated.

For a long time children with PDA were persistently squeezed through, what in the majority of cases was, the incompatible environment of mainstream school – simply because this was the only available option. Local authorities advised that this was the only way to gain “evidence” about whether or not the child would be “fine in school”. Repeated and irretrievable damage and trauma was inflicted on this vulnerable group so that said “proof” could be gained. It took an unfathomable number of exclusions, mental health breakdowns, incarcerations in ATUs and childhood suicides before systemic changes were made.

Before this, the majority of parents felt helpless and disempowered by the system as their child was failed and flailing in mainstream settings, had to “elect” to home educate without support, or fight tirelessly through costly tribunal processes to gain an appropriate and more specialist or bespoke provision for their child. This incompatible and under resourced system resulted in irretrievable harm to the mental health of these children.

Consequently, children with PDA became adults with PDA with complex and preventable mental health difficulties. Parents of children with PDA also experienced a decline in their own emotional well being; as a result of the pressure and unrelenting stress of fighting for their child’s basic right to a fair and equal Education (a fight not exclusive to parents of children with PDA, but shared by many parents of children with SEND.)

PDA was not only unrecognised within crucial services though, it was also relatively unheard of within the general population. Understanding of the very different set of needs and support required for people with PDA was very poor. This meant that all too often children with PDA were perceived as “naughty” and parents considered to be either lacking in discipline or “anxious” https://pathologicaldemandavoidanceaprofileofautism.com/2019/05/01/please-stop-describing-send-parents-as-anxious/

Thankfully, after years of fighting, greater understanding of Neurodiversity led to a shift in services. Local authorities now meet the needs of this group of children by providing bespoke plans for each child based on their individual strengths and difficulties. And whilst limited funding will always be a challenge for services, at least we now live in a time where there is equal recognition and respect for the full range of diverse needs our children present. This progress has allowed children with PDA to learn and develop in environments that naturally allow them to flourish and thrive.

With this change we have also seen an exciting shift in the focus of our research into PDA, with an increased interest in how the PDAers differently wired brain; makes them such great leaders, entrepreneurs, and agents of change and progress. PDA in 2039 presents us with many new and exciting prospects.

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Please Stop Describing SEND Parents As Anxious

It is time to stop describing SEND parents as “Anxious”.

All too often we hear or read statements where the parent of a child with special educational needs or disabilities (SEND) is labelled as “anxious”. Such statements can often be underpinned with judgemental and critical tones.

Too many professionals who are not qualified to do so, have a propensity for making observations of parents such as; “Johnny has difficulty with X and we also observed Mum displaying high levels of anxiety.”

Sadly these judgements are not made exclusively by professionals but can also extend to, equally unqualified, family and friends.

Anxiety is something we all feel when we are worried, tense or afraid. Anxiety is a natural human response when we perceive potential threat. All people feel anxious at times, but it is particularly common to experience some anxiety while coping with stressful events. There is not a single manual that defines anxiety as a flaw, an inability to cope, or a fault. Yet when SEND parents are referred to as anxious, a critical lens and tone is very often evident.

All SEND parents are naturally and understandably worried and concerned about their child’s difficulties. All parents of children with disabilities remain “on alert”. It is a natural and instinctive response for SEND parents to have and it is developed so that parents can become fully attuned with their child and their additional needs. When SEND parents are on alert it is a functional and adaptive response and it is necessary.

Parents of children with SEND will be able to provide numerous examples of how being on alert has prevented falls, injuries or a child experiencing higher levels of distress. When a SEND parent steps in to deflect, distract or to simply offer their child a feeling of additional safety with their presence, there is always a good reason for them doing so. These are normal developed responses that SEND parents have, in order to safeguard their child’s emotional and physical well being.

Attending most events; medical appointments, parks, social activities, is often very stressful. Lots of additional planning and support is needed and for parents this usually means never being able to fully relax. This can feel quite difficult for family and friends of SEND parents and in itself can lead to conflictual feelings.

The other beautiful facet in labelling SEND parents as anxious; is the gender factor. We rarely hear the phrase “Dad was observed as being particularly anxious”. Infact Dad’s words and Dad’s responses often seem to remain unreported and invisible.

But are Fathers of children with SEND less anxious?

In reality, present Fathers of children with SEND can be just as concerned and just as “on alert” as Mothers of children with SEND. However, in our culture there is great readiness to pathologize women and judge women’s mental health through a critical lens. The gender stereotypes of women as fragile and vulnerable are unfortunately not as outdated as we may like to think. These critical stereotypes still dominate narratives about parenting, especially in health and social care settings.

“Anxious” should not be used as an adjective with inbuilt criticism and judgement. And unless you have the professional training and qualifications required to diagnose someone with clinical anxiety, you do not have the expertise to comment on such matters.

The irony of all of this is that very often it is the systemic and societal battles that SEND parents have to endure that ultimately take their toll on parents’ mental health. This is not due to the needs of their child or the challenges their child faces, but due to systemic failure to provide support and failure to withhold ill informed criticism and judgement.

So, if you have not walked for a week in the shoes of a SEND parent, please do not describe the way in which a SEND parent presents, or pass judgement on their style of parenting.

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Neurodiversity, Desensitization and Trauma.

Many of us will have heard similar phrases in relation to how our neurodiverse children cope with playgroups, school and other complex multisensory environments.

“He’ll soon get used to it!”

“He’ll be alright once he’s settled in!”

“She’s fine once she’s here!”

But what happens when they’re not fine and when they’re really not getting used to it?

William becomes so overwhelmed after being in a complex environment and the inherent sensory, social and everyday demands ultimately push him into survival mode.

After years of trying many different groups from Mother and Toddler and Music and Movement to different Stay and Play groups and Forest Schools; William’s tolerance has not increased.

Once we started to understand William’s needs more fully and recognised a clear pattern in his behaviour and communication, we decided to try reducing the group sizes that William was expected to manage in.

I explained this recently to a health professional and described how positive William’s response to this has been. I explained that by reducing group sizes we have seen a reduction in his anxiety levels and the duration of his meltdowns.

The professional argued that:

“The trouble with this kind of approach is that if we don’t keep putting him in busy environments; he won’t become desensitized to them!”

This is not an uncommon view and I’m sure many of you will know this from your own experiences.

Is it possible that daily exposure to complex multi sensory environments can lead a child with a highly sensitive nervous system to become; less hypersensitive?

It might be useful to start by deconstructing what is meant by the term desensitization. Desensitization is a term that gets used quite liberally in everyday discourse, especially around this topic. Sometimes it is clear that the meaning of desensitization gets lost in translation.

Desensitization is not a naturally occurring process; to become desensitized certain conditions need to be in place. This is known as systematic desensitization. Systematic desensitization is a behavioral technique commonly used to treat fear, anxiety disorders and phobias. Using this method, the person is engaged in a form of relaxation and gradually exposed to the anxiety-producing stimulus, like an object or place.

In order for systematic desensitization to be effective; the person needs to feel comfortable and empowered; as opposed to flooded and overwhelmed. Effective systematic desensitization is a controlled process. This is very different to the common misconception that desensitization occurs by repeatedly placing a person in a given situation.

What actually happens when neurodiverse children with highly sensitive nervous systems are repeatedly exposed to environments that overwhelm them, is that their survival mode is activated; they fight, flee or freeze.

The latter is the least recognised response and one that often renders children’s pain and anxiety invisible. A child whose nervous system has been screaming “get me out of here”, but who also feels unable to fight or take flight, will most likely freeze instead. This survival mechanism is the brains ways of protecting itself from further trauma. It is a way of shutting down, or dissociating from the traumatic stimuli in the hope that it will stop!

When a person repeatedly freezes in response to traumatic stimuli it is usually because they feel they cannot escape the pain and distress any other way. One example of this would be in a nursery or school environment where a child does not have the power to leave and feels trapped. When a person believes that they have no way of changing what is happening to them, no matter what they do; learned helplessness can occur.

Learned helplessness arises when a person endures repeatedly painful or otherwise aversive stimuli which they are unable to escape from or avoid. After such experiences, the person learns to accept that they cannot escape from perceived threats and so they continue to freeze, shutdown or dissociate each time they feel this way. This makes children particularly vulnerable.

In response to the opening quotes and the notion that “they will get used to it in the end”, we need to consider carefully, what getting used to something might really mean for children who have these kinds of fragile nervous systems. We need to ask; what are the consequences of getting used to something that is repeatedly experienced as traumatic and overwhelming?

“Forcing autistic people to experience painful or aversive stimuli is harmful, whether it is done as behavior modification, or out of disbelief that something that is not painful to you could be painful to us, or even for therapeutic purposes such as desensitization.” https://www.spdstar.org/node/1137

The idea that we can all get used to something over time, can also be explored by thinking about the process of habituation. Habituation is the diminishing of an innate response to a frequently repeated stimulus, leading to a marked drop in arousal levels. So in other words, over time arousing sensory input becomes less arousing.

The notion of habituation would lead us to assume that, there is a naturally occurring, positive effect of being in the same situation over a period of time. Typically, and in terms of neurotypical operating systems this is often true. Many people do habituate to many given situations, over time. However, when we consider neurodiverse operating systems we cannot assume that the same process of habituation occurs.  What if neurodiverse individuals do not have a typical habituation response?

Vivanti and Dissanayake (2018) carried out a research study which examined Attention to novelty versus repetition and found that people with ASD have less effective habituation systems.

“This lack of habituation results in an exaggerated perception of changes in the environment which in turn leads to sensory overstimulation, distress and the perception of the environment as highly unpredictable.

https://www.sciencedirect.com/science/article/pii/S1878929316301670

So rather than habituating; some Autistic children will have ongoing levels of extreme anxiety, where they function primarily in survival mode. Repeated exposure to these aversive conditions can, over time, lead to the development of PTSD and other mental health difficulties.

Because more typical responses to busy environments dominate; the world is not set up or designed to cater for neurodiversity. Neurodiverse people with hypersensitive sensory systems do not have their experiences of sensory pain, discomfort and overwhelm understood or validated. We are a long way off making actual accommodations; real changes that neurodiverse children and adults need. What our society does instead is insist that enough exposure to the available systems will, in time, lead to desensitization. It is not viable practically or financially to acknowledge that this is not true for all.

In the meantime; children with fragile nervous systems who do not cope in complex sensory environments such as school continue to experience distress, dysregulation, higher levels of anxiety, exclusions and very real and worrying mental health issues.

When we sit with our children back home after they have struggled in busy environments and whilst they behave in a way that is best understood as a panic attack, or when they completely shutdown and have barely enough energy left in their little bodies to function, we may often feel incredibly helpless. I have absolutely felt helpless at times and unsure of what we should do for the best.

But we are not helpless, we are parents of amazing children who have so much potential and many talents. We have a fight ahead for sure, one that many before us have had and many after us will still sadly need to have too. But we all have personal power and as parents we have more strength within us to fight for our children, than we would ever have for ourselves.

Outside of these individual battles and fights for our childrens rights, their well being and their right to a fair and equal education, it is also time for us to keep challenging more widely; the deeply ingrained beliefs and misconceptions about such things as desensitization and the things all children “must do” and “must be”. We must stop forcing our most vulnerable children to endure environments that do not meet their needs. Very real accommodations to existing environments need to be made and where such changes are not sufficient for the individual child; new and bespoke environments must be created. We cannot continue to damage children by making them endure traumatic settings; just because that is all there is available. Every child has a right to have their individual needs met and their differences respected.

As our family travels through our EHCP journey with William, I will write more on this subject and I will come back to share details about our fight, our specialist professionals and the individual and bespoke Education plan we are hoping to secure for our boy.

 

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To Whom It May Concern

This is a letter written to help a dance teacher understand William’s needs before his first lesson. I’ve kept it as a starting point for other letters. I adjust the content each time, including or excluding information; on a need to know basis, depending on the recipient and setting. I always keep William’s well being at the forefront of my mind when deciding what information to include.

The aim of this letter was to help the dance teacher understand why William might appear not to be listening, may not be able to follow many of the instructions, why he might need to do his own thing (such as run round in circles when anxious) and why demands are so difficult for him to cope with. I know many people look at me like I’m an odd parent (and worse I’m sure) when I talk about using non directive language and reducing demands, so I keep trying to think of different ways to reach people; to help them understand Pathological Demand Avoidance. I wondered if writing the letter “from William” might make a difference.

I’m pleased to say that this letter did help, in that it prevented the dance teacher from responding to William as a perceived “naughty boy” who was behaving inappropriately. She was able to accommodate his needs and allow him the space to express and enjoy himself. I also stayed throughout the session and intervened each time it was needed. Of course this isn’t always possible, but in my experience our presence can make a big difference to how others respond.

The letter might have transferable content, especially if you have a child who masks too.

Dear Teacher, / Friend/ Family Member or Club Leader…

“This Is Me” … I hope you can understand!

My name is William and I am 4 years old.

I love music and I love the song “This is me” from The Greatest Showman. I love expressing myself to music, especially by running round and round in circles.

Mommy has been talking to me about coming to your dance class. This is something I’d really like to do, but I feel very anxious about it. I feel anxious about lots of things, a lot of the time.

I am Autistic and I find it extremely difficult to follow everyday demands. This is known as PDA.

I’m nervous about not being able to copy the dance moves. I’m often unsure where my body is in space, because I have a sensory processing difficulties. This means that at times, I am unable to process sensory information well enough for function. I also have hypotonia and hypermobility which still effects my mobility.

There are lots of situations where PDA really gets in my way! It might not always appear like this; but I really do not choose to react in some of the ways that I do. Having PDA means that I find it incredibly difficult when people tell me what to do. My brain hears “demands” and “instructions” and interprets these as something I need to avoid at all costs. In my brain, “demands” trigger feelings of panic and fear. Sometimes this leads me to run off, refuse, shout, become distressed or to hold it all together and “mask” until I feel safe again.

I can behave differently to a lot of other children, and even though I’m only 4, I am already aware of this. I don’t want to stand out or look different as this makes me feel scared. I don’t want to look scared, as this makes me feel vulnerable. In order to feel less vulnerable, I try to watch how other people behave, and I try to copy them. Sometimes this works and sometimes it doesn’t. People call this process “masking”. To me, it really just means that when I am in unsafe territory, I “hold it all together”; my fears, my stimming and my outbursts of emotion, so that others don’t notice my struggles. My only safe territory is at home by the way, when it is just me, Mommy and Daddy.

Masking is incredibly exhausting!

When I’m back home, on my own with Mommy and Daddy, I feel safe again, so I don’t have to keep masking. This always feels like such an incredible relief. But this is also when I have to let out all of the pressure that has built up inside me (if I’ve managed to hold onto it that is and there are times when this isn’t possible). In situations where there have been a number of demands placed upon me, and there nearly always are because demands are everywhere, I become a bit like a coke bottle that has been shaken up. This means that when I get home, it only takes a tiny last jolt and the top comes off and the bottle spills over, or explodes!

If I explode it is because everything has become out of my control. This is when my body’s FIGHT/FLIGHT/FREEZE response kicks in. This is a survival response we all have, but in children with PDA this response is triggered a lot more frequently, especially when they are not in a PDA friendly environment, which unless PDA is fully understood and accommodated, is almost EVERYWHERE. Lately I have had a lot of FIGHT responses. And I HATE it!

After I have been in the survival mode of FIGHT, I feel really sad and I start thinking that I am a bad person. Mommy and Daddy tell me I’m not and they comfort and reassure me. I have heard Mommy explain that when I react with FIGHT, it is best understood as a panic attack. Mommy was able to understand this more fully after she read the wonderful work of Yvonne Newbold and “The SEND VCB Project”. Yvonne offers incredibly insightful information, delivers training workshops and runs a Facebook support group called “Breaking the Silence on SEND VCB”.

It makes me feel better when Mommy and Daddy try to understand. One day, when I’m old enough, they will explain more of this to me. They will tell me that I am Autistic and that I have PDA. This will help me to understand that my brain is wired a little bit differently and to know more about why I have lots of really amazing strengths, as well as some of these difficulties.

But this is not all gloomy, at least it doesn’t have to be. You see, when people around me are able to follow PDA strategies, it really helps! When my environment is right, some of my anxiety subsides. When I don’t have to be on such “high alert”; I can find sufficient calm to listen, to learn and to feel happiness. I am able to show more of the many wonderful parts of me; how loving, kind, creative, smart and funny I am. I have lots of interests that I love to talk about and one special interest that I would love to tell you ALL about. (I might need another whole blog for this though!)

Mommy has attached a separate document explaining what PDA is and what PDA strategies are. She has included some links to some really clever folk’s work that explains how you can support me and children like me. I really hope you can read them.

Most of all, I really hope this letter helps you to be able to see me and that it makes it possible for me to be able to have the same chance as other children; to learn from you.

Love from,

William 💛

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https://www.pdasociety.org.uk/resources/awareness-matters-booklet

https://www.pdasociety.org.uk/resources/education-resources

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The Way We Talk About PDA Matters

When I read about the core features of PDA, I am able to see lots of examples of each in William. But when I think about how some of these features are described, I do wonder whether we could do so in more positive ways. One (of many) examples of this, for me, is the idea that PDAers withdraw into fantasy. I’m going to reflect on this feature in children.

The National Autistic Society describe how for some children with PDA; avoidance strategies include:

“Distracting the person making the demand, acknowledging the demand but excusing themselves, procrastination and negotiation, physically incapacitating themselves, and Withdrawing into fantasy.”

The word “withdrawing” suggests that this is problematic in some way, a “symptom” of PDA even. However, there are aspects of the way individuals with PDA use fantasy that could be seen as incredibly functional and protective. If a child feels afraid or threatened by a request / demand and their nervous system is telling them to avoid or escape it, using some form of fantasy or “story” to help them, is actually a pretty smart idea. It is a much more adaptive way of escaping a perceived threat than an aggressive strategy, for example.

But if we go one step further than this and consider how the use of fantasy is a critical part of any child’s developmental journey, we can formulate the use of fantasy as a strength. John Holt viewed fantasy as a positive and incredibly important part of children’s learning. Interestingly he more specifically said that:

“Children use fantasy not to get out of, but to get into, the real world”

He argued that because children just want to do what the adults around them do; read, use tools, make decisions and to ultimately have control over their lives, they will use fantasy to “pretend” they have the power that they crave. Holt also explains that using fantasy is something that is a fundamental and growfuthful part of how children LEARN. If children with PDA are spending extended periods of time in fantasy, Holt would argue that they are spending extended periods of time learning.

So perhaps the PDA child should not be described as withdrawing into fantasy in a way that is problematic, but rather as simply being in need of more fantasy play at times when they feel most powerless. It also strikes me that fantasy play is a really important tool for children with PDA and I can absolutely see why they would want to and need to cling onto it.

Furthermore, when a child with PDA is engaged in fantasy, it is also a really wonderful opportunity for us to meet them where they are and to genuinely be alongside them whilst they explore their emotions. If they are happy for us to do this (or to give us the script they want us to follow or the character they want us to be) these are really critical moments for us to embrace; without agenda or direction, but rather with lots of unconditional love and support. 💛

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