In this article I hope to describe how Dr Stephen Porges’ polyvagal theory has helped us, as parents, to develop greater insight into our son’s experience when he is faced with everyday ‘demands’. This will provide a context for my hypothesis that:
Highly sensitive neuroception may be at the heart of PDA
PDA is currently categorised 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 – 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 proposed diagnostic features:
https://pdaguidance.wordpress.com/pda-diagnostic-criteria/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820467/
When we discovered that our son is Autistic, I started researching more widely about ‘autism’. Being bombarded with the pathology paradigm everywhere we looked was not serving us well.
It became apparent to me very early on though, that understanding the nervous system was likely to be fundamental to understanding our son’s responses to demand stimuli.
In 2017 a specialist, independent OT also helped us to think about the role of the nervous system in relation to William’s gross motor challenges and sensory modulation difficulties. Since then, my curiosity has led me to read some really interesting research and to consider this, more specifically, in relation to PDA.
“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 resistance to everyday 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 hyper-sensitivity.
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 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. Dr 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).
Some of the behavioural responses associated with the PDA profile of Autism, are considered in the context of “challenging behaviour”. In many settings the child themselves, the parents, 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 term 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 behaviours in a child, the first question to ask is: Is the behaviours 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’ 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 flop), 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 an important light bulb moment for me. Porges’ 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’, that 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.”
For some with the PDA ‘profile of autism’, perceived danger, or a neuroception of threat, is almost constant in environments where everyday demands are all around, and complex social and sensory information is overwhelming.
Flight, fight and freeze are more widely known defence strategies. There is a further defence strategy that is less well documented though, known as fawn. The term fawn was 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.
I will explore a brief introduction to the responses we might see showing up:
1. 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.
2. 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).
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).
4. Fawning (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. This can be thought of as 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, “prosody 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.
5. Flop (collapse) sometimes also referred to as Faint is part of our shutdown response. This immobilization is not a chosen response, rather it is a reflexive one, triggered to safeguard us.
Our survival responses and the very different ways in which they present, mean 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’ term “faulty” with “highly sensitive” as I believe that this is about a different, rather than faulty neural process. We can appreciate and be grateful for the neuroscience, without subscribing to a medical model, using terms such as ‘faulty’ or ‘disordered’. We can replace these with more respectful and accepting references to difference, and still benefit from the theory’s applications. Adapting the narrative does not take away from understanding the impact of having highly sensitive neuroception. I feel it is possible and incredibly important to validate the difficulties that arise when we have a different experience of the world, without describing something inside of the person as faulty or disordered.
More on Fawning:
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 may more likely to be triggered to avoid conflict and to maintain feelings of safety until back in the refuge of home. When a neuroception of threat is detected at home around adults who feel safe; one of our other 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 more difficult to predict contexts. When the PDAer follows some demands for some people, some of the time, it can be very confusing to others 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 consider insights into fawning, as sitting supportively alongside the literature on masking.
PDA is complex and presents in nuanced ways, many of which are often confusing to 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. These are also being shaped by sympathetic nervous system activation and it is important to consider how this may impact communication and perceived sociability.
Jane Sherwin describes examples of these responses:
“Ignoring is a familiar first line of defence to avoid immediate compliance. Or she may simply need more time to process the request to ‘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).
Whilst less recognisably so, these examples are shaped by “flight” energy. If this stage of response is not working for the child, their state may shift, becoming more characteristic of “fight”.
As I see William become more activated, I tune in to my body, to help me respond more calmly. I seek to provide authentic cues of safety and to embody conditions that support him to return to a neuroception of safety.
When we become polyvagal informed, we can begin to feel into the kinds of conditions those with highly sensitive neuroception need, in order to return to their safe and social state. Understanding Polyvagal Theory may help to deepen our understanding of PDA, it certainly has for us, for which I am so thankful to Dr Porges.
Further exciting and pioneering insights can be found by looking at the work of Raelene Dundon, a Clinical Psychologist who looks at PDA through a trauma informed lens.
“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 see in William, in his most extreme responses to demands, resonance of a trauma response. I understand these responses as protective adaptations, automatic responses arising in survive of survival. When the body is in a defensive state, when the nervous system is activated, a consistently compassionate, attuned, calm and gentle approach is required to support the person back to safety.
“When neuroception tells us that an environment is safe and that the people in this environment are trustworthy, our mechanisms of defence are disenabled. We can then behave in ways that encourage social engagement and positive attachment.” (Porges, 2014)
Doing this is never easy, we still frequently struggle. But what we have found is that as our insight has increased and as we continue to do our own work, our capacity has too.
Polyvagal Theory and a deeper understanding of neuroception, through a neurodivergent lens, has helped us to consider in more detail; the conditions we need to ensure William has both inside and beyond the home environment. In particular, the essential and non negotiable conditions he needs in his individualised education plan.
“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] creating “safe zones” that trigger through neuroception a physiological state of safety” (Porges, 2017)
Understanding and applying the principles of Porges’ work to educational and clinical settings, could help offer our children the crucial support and accommodations they need. There are exciting, empowering and hopeful messages within Porges’ work and it has great utility in terms of understanding the requisite conditions required for PDA individuals 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 the Facebook Page:
https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/
You can also find Part 2 to this article here: https://m.facebook.com/story.php?story_fbid=3162061340517553&id=2220639254659771
References
Bal, R. (2019). “Fight Flight Freeze Fawn Responses And The Pitfalls Of Empathy” Resolving Trauma and PTSD. Retrieved from http://www.rolandbal.com/fight-flight-freeze-fawn/
Bracha, S. Williams, A. E. & Bracha, A. S. (2004). “Does ‘Fight or Flight’ Need Updating?” Psychosomatics 45, No. 5
Delahooke, M. (2019). Beyond Behaviours: Using Brain Science and Compassion to Understand and Solve Children’s Behavioural 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 Defence 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, S. (2004). “Neuroception: A Subconscious System for Detecting Threats and Safety.” ZERO TO THREE 24, no. 5 19-24
Porges, S. (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 Surviving To Thriving. CreateSpace Independent Publishing Platform.
