Libby Hill: I am delighted to be talking to the person behind Changing the Narrative about Autism and PDA, Jessica Matthews. I’ve been following her for a while now and look forward to her posts. She wrote an article last year which really resonated with me. Welcome Jessica!
Jessica Matthews: Hi Libby. Thank you so much and thanks for asking to interview me about neuroception.
Libby Hill: Thank you for accepting! My first question for you relates to the term neuroception. Can you explain what neuroception means?
Jessica Matthews: Neuroception is a term that was coined by Dr Stephen Porges to describe 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. This then determines our autonomic state. Our neuroception assesses information inside our body, outside in the environment and between us, in our relationships (Dana, 2018).
Neuroception is informed by our 8 sensory systems. Our 5 basic sensory systems are; visual, auditory, olfactory (smell), gustatory (taste) and our tactile system. The 3 other sensory systems are our vestibular system, our proprioception and interoception. Sensory hyper sensitivities or hypo sensitivities will therefore impact our neuroceptive system too. For some of us, differences in sensory processing, mean that we don’t always feel safe in our bodies. Our ‘felt sense' of danger can be very powerful and overwhelming at times, or it can 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.
When Dr Porges describes neuroception, he explains that “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. I noticed when my son was a baby, that 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 is known as fight or flight. The third and oldest state, is characterised by immobilisation and is known as shutdown. We can liken this to the turtle who retreats into his shell for safety.
Moving between autonomic states is 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 Hill: What can we do if we suspect that neuroception is an issue?
Jessica Matthews: 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, and the role we can play as parents, educators and therapists to support the physiology of our children’s nervous systems. I wonder whether the somatic (bodily) experience of feeling unsafe, arising from sensory processing differences, contributes to the PDA individual’s highly tuned surveillance system. It is difficult to know the PDA nervous system, and not to question whether some of its longer-lasting mobility and immobility, may arise from sensory trauma and demand trauma, from living in a non-accommodating and demanding world, that is not built for neurodivergent needs.
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 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 able 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, 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 behavioural responses, 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, 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.
At the top of the Polyvagal ladder is our safe and social state (ventral vagal). Here, so much more is possible and we feel safe, connected, calm and grounded. In our safe and social state, we are able to enjoy time alone, or with family, friends, pets, passions and nature, within which everyone needs a different balance between solitude and social engagement with other human beings. 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 and how I ‘should’ respond. These ‘shoulds’ rarely appreciate the impact our autonomic state has on behaviour, and how children’s responses relate to how safe or unsafe they are feeling at that moment.
In flight or fight, the world feels 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 ‘freeze’. Freeze is a mixed state, where the body becomes really still and fight or flight is essentially ‘on pause’.
‘Fawn’ is also a mixed state, not shown on the visual. It is also made up of 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.
Our neuroception is constantly risk-assessing and from each state will either move us back up the ladder, or drop us down. At the bottom of the ladder we have the protective state of shutdown. When our son is in shutdown, we see that he is unable to respond, and sometimes even hear us. He is certainly unable to process any more input. Essentially, his nervous system has now formed a cocoon, enveloping him from the danger he neurocepts. This third and oldest state, is characterised by dissociation, immobility and collapse, otherwise known as ‘flop or faint’.
As parents, before we made considerable Polyvagal informed changes to our parenting and lifestyle, we felt more frequently challenged by our son’s responses to everyday demands. This meant that we were not responding in the most helpful ways. Learning how to recognise the physiological signs of being in a state of connection, mobilisation or immobilisation and how to map out what is happening in our son’s nervous system, as well as our own, really changed our perspective.
Our responsibility to be regulated as caregivers, educators and therapists, is a critical one. Our nervous system state and the way it communicates with another person’s nervous system is powerful. For neurodivergent children, the world can be a very demanding and overwhelming place, so we need 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 or the tone we use, it is also about how 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 Hill: 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. Being kind to ourselves is 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 with love and compassion, 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, and tighten our boundaries to 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. When we escape the pathology narratives, and the outdated behavioural advice, we become so much freer to understand our children as individuals, to lean into our compassion and to trust our own skills and expertise as parents. 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 meet them. When we become Polyvagal informed, we can see how, via neuroception, demands are often ‘coded’ as threats. I understand PDA as a protective response system, that defends the individual’s need for autonomy and freedom. I also see that being PDA, is part of being Autistic. Being Autistic is characterised by Dr Nick Walker as a subjective experience that is more intense and chaotic than that of non-autistic individuals, where the impact of each bit of information tends to be both stronger and less predictable” (Walker, 2015). Understanding this, makes it much easier to understand how anxious, fearful and overwhelmed PDA individuals 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, their nervous systems will trigger one of the 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. The time to embrace a paradigm shift and to become Polyvagal Informed is now.
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.
Libby Hill: Thank you very much Jessica. I look forward to talking to you again at some point soon. Jessica Matthews: Me too, thank you Libby. Speak soon.
To hear more from Jessica Matthews, you can follow her on Facebook:
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.
Walker, N. (2015). The Real Experts: Readings for Parents of Autistic Children. Autonomous Press.
Walker, P. (2013). Complex PTSD: From Surviving To Thriving. CreateSpace: Independent Publishing Platform.