Some parts of this article were first published on the 9th June 2020 for Libby Hill’s Smarttalkers blog. This article includes additional personal reflections. It also includes a series of questions that Libby asked me in relation to Neuroception, with a particular focus on PDA; Pathological Demand Avoidance. PDA is described as a profile of Autism and it has a distinct set of strengths and difficulties.
PDA can be understood in a number of ways. We can explore PDA by researching the diagnostic criteria which interprets observable behaviours. We can look at PDA, as I find helpful to; through a Polyvagal lens. We can also be curious about PDA as an identity, the essence of PDA, it’s function, it’s utility, it’s challenges, it’s beauty….
For me though, amongst many other things, I see PDA as a way of being that extends an invitation to embody freedom.
I wonder how many of our Autistic children who are also PDA are urging us to take their hand, with the intention of leading us towards a different way of being? A simpler, freer, more connected life?
For the PDA individual themselves, freedom and autonomy are deeply compelling needs. When unmet, immense difficulties arise and some of these can be understood through a Polyvagal lens.
I answered Libby’s questions as a Neurodivergent woman and parent of an Autistic son who has been diagnosed with the PDA profile of Autism. Alongside my passion for Polyvagal Theory, I am passionate about positive narratives in relation to Autistic identity and PDA.
In the interview we explored what Neuroception is and what an understanding of Neuroception offers us.
Jessica Matthews: “Neuroception, a term that was coined by Dr Stephen Porges, describes how our autonomic nervous systems take in information through our senses, without involving the thinking part of the brain. Neuroception is the process of ‘coding’ the information we receive as safe, dangerous or life threatening, which then determines our autonomic state. Our neuroception assesses the information inside our body, outside in the environment and between us, in our relationships (Dana, 2018).
Neuroception is informed by all 8 senses; interoception, proprioception and the vestibular system, as well as sight, smell, hearing, touch and taste. Sensory hyper sensitivities or hypo sensitivities will therefore impact our neuroceptive system too.
As a neurodivergent woman my ‘felt sense’ of safety or danger, can be very powerful and overwhelming at times.
For many Neurodivergent people, feeling safe inside our bodies can be challenging at times. Our felt sense may be chaotic, difficult to specify, as well as to describe.
Felt sense is our internal bodily awareness made up of micro sensory experiences that we feel inside our body.
Internal cues of feeling unsafe, trigger our Neuroception of threat, just as external cues in our environment or relationships will. “If our neural circuits perceive a threat; the principal human defence strategies are triggered” (Porges, 2004).
Neuroception is one part of the Polyvagal Theory, which has transformed the way we understand the autonomic nervous system. Polyvagal Theory explains that there are three distinct circuits which make up our autonomic nervous system. These circuits are arranged in a hierarchy and so we move through each in sequence.
The newest circuit, exclusive to mammals, is characterised by connection. It is often referred to as our safe and social state because it fosters safety, social engagement and playfulness. Our safe and social state is supported by warm facial expressions and vocalisations that are melodic or have a soothing rhythm. Vocalisations that support cues of safety, also have a particular frequency.
When my son was a baby, he responded fearfully to stimuli such as deep laughs, thunder and certain tones of voice, something he remains attuned to now. Dr Porges refers to these as “lower pitch sounds” which finely tuned neuroceptive systems are biased towards “in order to detect the movements of a predator” (Porges, 2017).
The second state is characterised by mobilisation and what we know as fight or flight.
The third and oldest state, by immobilisation, which is referred to as shutdown. We can liken this state to the turtle who retreats into his shell for safety.
Moving between autonomic states is a normal part of everyday life, something we all do in small ways throughout the day, in response to everyday life. For some though, the movements between states are “more extreme and impact our moment to moment capacity for regulation and relationships” (Dana, 2018).”
Libby: What can we do if we suspect that neuroception is an issue?
I think the way we frame neuroception, fundamentally shapes our approach. If we categorise particular variations in neuroception as ‘faulty’, we align with a medical model. Because this feels incongruent for me, in my article last year I used the term ‘highly sensitive neuroception’ when exploring this in relation to PDA (Pathological Demand Avoidance). Others have also moved away from the term faulty neuroception.
Deb Dana uses the term ‘highly tuned surveillance system’ and Tracey Farrell recently proposed the term ‘finely tuned neuroception’. These references to ‘tuning’ are really helpful, because our nervous systems are tuned according to the experiences we have. I also appreciate how this terminology respects the way our nervous systems safeguard us, exactly as we need them to, according to our individual differences and social contexts.
Published research into PDA so far, has considered the cognitive and behavioural components of PDA, but as yet has not explored the physiological components. I am interested in all perspectives of PDA, but I am particularly curious about the neurobiological mechanisms, as well as the role we can play as parents, educators and therapists to support the physiology of our children’s response systems.
I wonder about the somatic experience of having a protective response system that is frequently triggered by daily threats to one’s autonomy and freedom, in addition to the layers of sensory, social and information overload, that is part of the Autistic experience.
As parents, deepening our understanding about neuroception, and the 8 sensory systems, whilst becoming polyvagal informed, has really supported us to understand the individual cues of safety or danger that our son experiences, specific to his neurology. Reflecting on neuroception in the context of my own and my son’s sensory processing systems, has been really important.
Making changes to our environment and lifestyle, building in personalised sensory diets and a range of individually tailored supports, has also been really helpful. We prioritise play in calm and low arousal environments and have seen how making meaningful changes to this time with our son, really helps to support him. Play is described by Dr Porges as a ‘neural exercise’ that fosters the co-regulation of physiological state and supports physical and emotional wellbeing (Porges, 2017).
Organically, over time, we have also significantly modified our approach to parenting. We have rejected our western society’s preoccupation with normalisation and ‘fitting in’ and carved out a very different path.
I have been squeezed through, and indeed tried to squeeze myself through, enough normalising pipelines to know the harm such approaches can cause to the mental health and well-being of the neurodivergent mind and body.
Adapting our mindset has been a really critical aspect of how we have become more equipped to support our son’s finely tuned neuroception.
All too often our children’s adaptive behaviour is misinterpreted and responded to as intentional misbehaviour (Delahooke, 2019).
Through a Polyvagal lens and with an understanding of the autonomic nervous system, we can challenge these misconceptions and gain a deeper insight into the neurobiological basis of our children’s behaviour.
Deb Dana’s work supports us to understand that “from a state of protection; mobilisation or disconnection, survival is the only goal” and the door to connection becomes temporarily closed. Whereas “from a state of connection; health, growth and restoration are possible” (Dana, 2018).
When we think about Autistic children who have a PDA profile, it is so important to understand the adaptive nature of their responses and to recognise whether they are in a state of connection, mobilisation or disconnection.
Doing this not only destigmatises the behavioural responses that are listed under the PDA profile, but it also gives us the information we need, to respond in the most helpful way.
We have observed how demand stimuli, becomes less threatening for our son, when he is truly in connection with us, within a context that is shaped by mutuality, reciprocity and equal respect for adults and children’s autonomy and freedom.
Deb Dana helps us to understand The Polyvagal Theory and the hierarchy of our autonomic nervous systems in the form of a ladder. Thanks to Justin Sunseri LMFT, for his creation of this visual, based on the work of Deb Dana and Stephen Porges, which I include here to support this discussion, with his kind permission.
Everyone needs a different balance between solitude and social engagement with other human beings and it is important to respect these differences. Becoming more attuned to where we are and where our son is on the Polyvagal ladder, at any given time, has been so helpful.
When our son shifts down the ladder into flight or fight (sympathetic) we see and indeed I feel him disconnect, albeit temporarily. At these times others might make numerous subjective, and mismatched assessments about my son’s presentation, overlooking the impact our autonomic state has on our behaviour, especially in children.
In flight or fight, the world can feel dangerous, chaotic and even painful. In this state we are mobilised, agitated and unable to settle into stillness. If it is not possible for us to flee or fight, our neuroception of threat will drop us further down the Polyvagal ladder into ‘fawn’, not shown on the ladder above.
Fawning is a mixed state too, which is made up of both sympathetic energy and shutdown (dorsal vagal). Fawning (Walker, 2013) is an uncharacteristic mode of “people pleasing” or deferring to the needs and wishes of others, whilst surrendering one’s own, in order to feel safer.
I talk more about fawning here:
https://pathologicaldemandavoidanceaprofileofautism.com/2019/06/25/pda-neuroception-the-five-fs/
‘Freeze’ is also a mixed state, as we can see in the Polyvagal ladder visual. If neither of these defence strategies are available to us, our neuroception of threat will drop us down to the bottom of the ladder, into a shutdown state.
When in shutdown, it can be very difficult, if not impossible, to respond. Our processing ability changes and our capacity to tune into our external world is ‘paused’. For me, this can feel like my nervous system has formed a cocoon, enveloping me from any Neuroception of threat. It is also a period of reprieve and recalibration. I see this happen for my son too and in the same way that I would not wish my partner to disrespect my space when I am in shutdown, we hold space for his.
In this third and oldest dorsal vagal state, we also find dissociation, immobilisation and collapse, otherwise known as ‘flop or faint’.
As a neurodivergent person, I see befriending the nervous system as an incredibly important task, but one that we may need to be curious about approaching a little differently. Sometimes the ideal pursuit of ventral (safe and social) can have a fair amount of privilege attached to it. In this context it can feel like a struggle to be patient with oneself in dorsal (shutdown).
The low energy, immobilization and low tone in shutdown can create different stories and judgements. I hear much ‘hurry up’ and harshness when I’m in shutdown. My internal critic prefers I dance in sympathetic!? The swinging pendulum between mobilisation (flight-fight) and immobilisation (shutdown), is so familiar to me. Much of life has been here. But for my rest, there is great sanctuary in dorsal.
The challenge perhaps is to invite ourselves to embrace the sanctuary of shutdown as well as to welcome our need to mobilise again, as it arises.
Our different ways of being, bring different paths. Sometimes I find great freedom and restoration in dorsal. After time spent here, my energy and natural momentum returns and can take on a host of demands previously unattainable.
Equally, we need to honour our children’s nervous system shifts, support them with attuned and responsive relational safety. I see this respect for different nervous system patterns in a similar way to respecting individual developmental timelines.
The neurodivergent mind and body has individual and beautiful wisdom, and I invite others, as I invite myself, to connect with and respect these.
As parents, before we became Polyvagal informed and made changes to our parenting and lifestyle, we had a very different construct of Autism and PDA. Indeed, we needed to discard many of the narratives we had been handed from diagnostic clinicians and mainstream discourse, as we found them to be deeply invalidating and pathologising.
We found great value in learning how to map out what was happening in both our son’s nervous system and our own. This process started us off on a different path, which has really helped us to more fully support all of our needs.
Our nervous system state and the way it communicates with another person’s is powerful. For neurodivergent children, the world can be a very demanding and overwhelming place, so we need, as parents, carers and therapists, to be able to open our hearts and arms a little wider. The science of Polyvagal Theory shows how connection, loving presence, warm smiles, gentle eyes, facial expressions and prosody of voice, are all key safety cues.
Whilst we know that the language, we use with our children is incredibly important, it is not just about what we say that matters, it is also about how we say it and what our nervous systems are communicating. We can’t ‘fake’ safety cues, it isn’t enough to ‘act’ calmly, we have to actually be regulated ourselves. We can’t kid the nervous system, neuroception will always detect incongruent cues in another person’s nervous system.
Children generally, but particularly those with finely tuned neuroception, are very skilled at cutting through our facades and any incongruence stays with them, just as it does for adults. This means that authentic communication is not just advisable, it is crucial.
Libby: What would you say to parents who are wondering if this is their fault?
Jessica Matthews: There is no fault or blame in any of this and as a parent who has felt under the spotlight, I get just how important it is to know this. It really helps when we can be compassionate with ourselves when things go wrong. Being kind to ourselves is so important for us as human beings, as well as for our parenting. Self-compassion also supports us to tune back in, to resettle before we regroup and repair.
I think it’s also important to know that our children would not benefit from having robotic parents, who appeared to glide through the day, untouched by humanity. We all lose our calm at times, I know I do, and so it helps to remember that when we go back to our children after these inevitable encounters, we can repair any relational rupture. We can ensure they know that they are loved unconditionally, no matter what has happened. When we do this and then hold space for our children, we strengthen their sense of safety and support them to complete their stress cycle.
As adults, we need support too though. Polyvagal Theory teaches us that connection is a biological imperative and a lifelong human need. None of us were designed to navigate this world alone, or to parent in it without support. However, in a society where we are all under more pressure, juggling more, with less time for stillness, it is not always easy to find this. For many neurodivergent families who have one, or more than one PDA family member, this can feel particularly challenging, as we are frequently misunderstood and often isolated with the challenges we face.
This is where finding a community of supportive adults who really “get it”, is crucial.
The times when our children are struggling the most, are often the times when we feel most scrutinised. This can also be when we receive an increased volume of ‘well-meaning’ advice. Many of us will have been told that we need to become stricter as parents, that we need to tighten our boundaries and support our children to ‘fit in’. This not only makes me feel sad about how much others are failing to see and understand, but also sad because these are the narratives that make it more difficult for us to tune into our parental instincts, to our deeper knowing, beneath our conditioning and traditional western parenting.
It is often the external pressures and systemic oppression, that make it more challenging for us to facilitate the calm co-regulation our children need so much of.
For Autistic people with a PDA profile, safety is highly contingent on the need to be autonomous and free. Through a Polyvagal lens, we can see that the PDA individual does not choose to avoid everyday demands, rather their nervous system prevents them from being able to respond.
When we become Polyvagal informed, we can see how, via neuroception, demands are often ‘coded’ as threats. Understanding PDA as a protective response system, that defends the individual’s need for autonomy and freedom, within a world that is already full of overwhelming multi-sensory stimuli, makes it much easier to understand how anxious, fearful and overwhelmed individuals with PDA feel, a lot of the time.
It also becomes easier to appreciate how, when meaningful environmental and relational adaptations are made, within a framework of deep understanding, that this very same group is able to thrive and achieve amazing things. With this, the many strengths and the individual identity of Autistic people with a PDA profile, can be fully seen and known.
Libby Hill: Would you say we are teaching masking when we want compliance at school or to fit in with peers?
Jessica Matthews: I would say that in any setting where compliance is the goal and children’s neurological needs are not fully understood, honoured and supported, that their nervous systems will trigger one of the principal human defence strategies. This can present as masking or as flight, fight, freeze, fawn or flop.
Having to mask and frequently having defence strategies triggered, has a huge emotional and physiological cost. When PDA individuals needs are unsupported, their neuroception of threat will increase, which will often send them further down the Polyvagal Ladder. It is important to know that children’s needs and difficulties are not only overlooked when they mask or fawn, but also when they are sitting quietly in a shutdown state.
Whilst schools continue to use isolation, restraint, exclusions, rewards and punishments, in an attempt to motivate children who can’t, rather than won’t, they fail to honour the evidence base about children’s health and happiness.
Understanding neurodivergent identity is about being attuned to, and nurturing children’s individual neurological needs and wellbeing; to support their lifelong physical and mental health.
For me, this has involved immersing myself in the Autistic and PDA community and current literature and research written by Neurodivergent adults, as well as embracing a paradigm shift to become Polyvagal Informed.
Libby Hill: And on that subject, I’m really pleased to be able to share the news that you are writing an exciting book about Polyvagal Informed Parenting and PDA, which is due to be published by Jessica Kingsley Publishing in June 2022. Is there anything you can share with us about the book before we end?
Jessica Matthews: Yes, absolutely. Some people know that I’ve been working on a larger piece of work for some time now and I was so pleased when Jessica Kingsley offered me a contract to publish this. The book will share the parenting approach that we have organically developed through a polyvagal lens, within a neurodiversity framework and with a continually growing understanding of our son’s and each other’s needs. Our Polyvagal Informed Parenting approach has helped us to support our son to feel safer in this demanding world.
The book will provide an understanding of the autonomic nervous system, an accessible overview of Polyvagal Theory and a working understanding of how we offer, what I call the Polyvagal Informed Core Conditions (PICCs) across different aspects of our parenting. I hope that the book will be supportive to other families who may feel as lost as we did at the beginning of this journey.
To hear more you are very welcome to join me on my Facebook page:
https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/
References
Dana, D. (2018) The Polyvagal Theory In Therapy: Engaging the Rhythm of Regulation. New York: W. W. Norton & Company
Delahooke, M. (2019) Beyond Behaviours: Using Brain Science and Compassion To Understand and Solve Children’s Behavioural Challenges. PESI Publishing & Media
Porges, S. W. (2004). Neuroception: A Subconscious System for Detecting Threat and Safety. Zero to Three 24 (5): 19–24.
Porges, S. (2017) The Pocket Guide To The Polyvagal Theory: The Transformative Power of Feeling Safe. New York: W. W. Norton & Company
If you would like to read more you can also join me on my Facebook Page: 
Declarative Language can be a much less demanding form of communication. It is less directive and invites engagement. It is not a way to get compliance, it is a gentle and respectful way of approaching tasks and activities, using language that is less likely to trigger anxiety and panic.
You can also find more information, articles and links over on Changing The Narratives Facebook Page: 
