‘A PDAer will not accept anything on face value, not even themself.’

Guest blog post Listening to Harry Thompson on his Facebook live today asking for contributions to the essence of PDA has inspired me to offer my personal musings on what PDA is. It’s definitely not pathological demand avoidance. No demands are avoided when the world is on its axis but the problem is that the world has a tendency to keep tipping off! If anything, PDA would be better explained as an extreme intolerance of uncertainty. The only way for a PDAer to survive is in a state of complete freedom and autonomy. Every other state detracts from the PDAers life force, to varying degrees. The external world can feel like a prison with torture chambers. The internal standards can also demand ‘correctness’ or suffering if correctness is not achieved. Life is lived as a participant observer because the evidence about how to be human comes from living life first hand. This can lead to ending up in situations where the ‘participant’ part of the experiment can lead to precarious and even life threatening situations. The boundary for what is good, true, safe, healthy, wise, educational, fulfilling, interesting, useful and all of the opposites can only be identified by stepping up close to or across the boundary. Other people’s views can be trusted and used as a guide, but the PDAer has to have evaluated that persons credibility first and agreed that they are someone who can be trusted and respected, they do this not by judging a persons acts or words, necessarily, but by knowing their heart. This process can be instinctive and immediate or can require evidence and develop over time. Sometimes the PDAer, especially during the most treacherous of developmental periods in the lives of many: childhood and adolescence, can give the impression to parents, teachers and professionals that they ‘just don’t care,’ or ‘make bad choices and cannot be trusted.’ Their need for experimentation can frighten those that don’t understand that the PDAer wants to survive, and this is their way of going about it. What actually threatens the PDAers life is attempts by people to limit their freedom to explore the world and find their own answers, which can, ironically lead to the PDAer contemplating suicide or setting themselves on a steady course of annihilation. That is not to say that the existential angst experienced by the PDAer in their search for truth and meaning doesn’t also threaten their life but aiming to catch the PDAer and trap them within a set of rules imposed by people who the PDAer sees as unqualified to lead will promote utter devastation, often expressed using the 5fs. There will be no lengths that the PDAer will not go to, to ensure their freedom. Don’t push the PDAer, support them in their journey and you will see that they love life. Listen to what they tell you. If they tell you that they want to do X or Y, then allow them to do it, if you can, because they will know best what is right for them and will cease to engage in the activity if they find that it wasn’t right for them after all, or that it isn’t right for them at the moment, for any number of reasons, even if they desperately want to do whatever it is. In one respect it’s the extreme need for absolute rectitude and justice. Things need to be just, correct, evidence based and open to constant evaluation and revision to ensure that these standards are upheld. No-one has any more authority to deicide what is true and real than any other. That is not to say that there are no people who have, indeed, contributed a great deal to the exploration of human ‘being’ but there are an awful lot of people who merely reach a certain age or professional status and believe that they’ve therefore gained a superior insight into what it is to ‘be’ and how life should be lived. This can include teachers, parents and people within various professions and institutions. The PDAer cannot accept this fundamental injustice and will do everything to escape from the snare of liars and cheats. If you can tell the PDAer why they should be doing, thinking, saying something and they are in agreement with it, then you will not see any objection. However, if you explain why and they do not agree with you but you then aim to force them to follow your rules, ideas, plans etc… then you will see them react in any number of ways to protect their freedom. If there is too much injustice in a given situation then this can lead to non-verbal communication in the form of explosive and / or destructive meltdown. However, essentially, the PDAer is one of the most reasonable people you will ever meet if they are in their optimum state, because for them it’s all about reason and logic. Also on the matter of things being correct, the PDAer and autistic, will not accept mistakes or misrepresentation. That is not to say that they don’t tolerate or expect anyone, including themselves, to make any mistakes, it’s more that the mistakes, once identified need to be corrected. For example, if the PDAer is described by someone in a way that definitely does not represent the what they believe or intend to say then this can cause the PDAer to seek to correct that person. Stereotyping, pidgeon-holing, assumptions based on race, age, gender, accent or whatever are something that the PDAer rejects. Generalisations and not welcome unless there is enough evidence to make a generalisation. Ideas need to be specific and precise and you will find the PDAer and autistic spending time seeking clarity on matters small and large, which can come across as pedantic or overly critical to those who do not understand the reasons behind the outward expression. They tolerate mistakes in themselves even less well. Lots has been written on this under the banner of ‘perfectionism’ and ‘rejection sensitive dysphoria’ (which, are two of the areas where ADHD and PDA overlap, in my opinion). The most extreme way of managing this can be excessive people pleasing or not taking any kind of risk, whatsoever, and living a very restricted life. The PDAer may seem harsh or caustic at times but in reality they suffer deeply at the idea of the suffering of others, man or beast. They are essentially humanitarian, which is why hierarchy is abhorrent to them as it requires the subordination of one being to another, and that is a kind of enslavement. However, you will often find the PDAer at the service of others, often those who are in vulnerable positions, in order to protect and ensure their humanity. The self. It is difficult for the PDAer to develop a sense of self. This is not to be confused with a sense of justice. While the PDAer can have a strong affinity with certain causes, which may appear to be ‘who they are,’ they often have an elusive sense of self. They self is part of the PDAers exploration. They will often not commit to a given identity because they are not sure yet, without having all the evidence, which their true self is. How can they decide and commit to who they are without having explored all that there is to explore about human existence, and that takes a lifetime, doesn’t it? So the self can feel elusive to the PDAer who will try out different selves at different times and will wear different masks when interacting with others, until they have a better idea of who they are and whether they are prepared to share that intimate and private journey with anyone else. This will often lead people to see the PDAer as a ‘social chameleon,’ or ‘not sure of themselves.’ For the PDAer this can cause them to feel uncomfortable with uniting the different ‘selves’ or ‘characters’ that they play out in public, so mixing different groups of friends is often an excruciating and nerve wracking prospect. As they develop the PDAer can learn to become more ‘authentic’ but this process can take some time and is unlikely to be wholly complete while there is still more to learn, which, for the PDAer will be when they take their last breath. Despite this often tentative grasp on self-identity the PDAer will not accept outsiders defining who they are based on preconceived ideas, such as diagnostic criteria, race, gender, class, age etc… as mentioned before. Worthy of note, and ironically, there is the potential for the PDAer to dissociate and be open to influence and drawn into situations in search of this development of the self. This area of exploration for the PDAer can be the most profound and the most dangerous, but once they have enough experience to have a firmer grasp on the ‘self’ they can be a great source of knowledge and wisdom, mainly because their (re)search will have been so thorough. It will have combined lived experience, book and multi-media learning and will generally not venture into areas where they are unable to have lived the experience. That is not to say that they do not have an opinion on almost everything, they often do, as they are typically very contemplative individuals, but they will usually not claim to be a commentator, nevermind an authority, on that which they do not have first hand experience. Expectation and praise. This is so complex in the PDAer. It is rooted in perfectionism and RSD, on which there is lots written. The PDAer sees the need to meet the expectations of others and a direct threat to their freedom. They don’t want to commit to being the same way all the time or feeling s certain way in advance. If you say to the PDAer, ‘you are such an amazing friend,’ they will feel suffocated by the need to maintain that standard of behaviour. The question in the PDAers mind will be ‘so if I behave in a way that is crap and let you down, will I disappoint you and will you reject me?’ Sometimes it’s easier for the PDAer to keep people at a distance in order to manage the onslaught of demands to act a certain way or maintain friendship exchanges, even when they don’t feel like it. Often people see this as not being a good friend, when for the PDAer things like frequency of contact have no bearing on how they feel about a person. Often the PDAer will end up with very few people who are able to understand this about them, i.e. people who know their heart. This processing of expectation and praise can be applied to any relationship or setting and can be crippling to the PDAer. The need for structure and routine but defiance of the very notion. Because the PDAer often has an elusive or changeable sense of self or direction, in their life search and journey, structure and routine can help them to feel grounded. Ironically though, they abhor boring, stuffy, conventional, ways of being because they offer very little in the way of personal growth. Not only that the PDAer is quirky and queer by nature. However, there is often a misconception about being quirky or queer. Often ‘followers’ are found wearing outrageous clothing or belonging to alternative groups. You may find the PDAer lurking among them but you may also find the PDAer in very mainstream settings or with no outward expression of their quirks, such as piercings or tattoos. The quirky and queerness is more of a proclivity or propensity. They need to fulfil the need to laugh and get excited, and this will almost certainly be expressed through something extreme or outrageous. They have an innate understanding (or at least a very early understanding) that nobody knows why we are here. The enormity of the universe and existence makes for an overwhelming desire to just ‘go crazy,’ lighten things up and have a laugh to get through it all. Things which the PDAer will undoubtedly struggle with are romantic relationships, conventional employment, friendships, familial relationships, nonsensical and illogical rules or laws, sensory overload (as they are hyper-sensitive) and self (loving/loathing). That’s all for now and that’s my personal view informed by lived experience. There’s so much more to say on independence, control, need for certainty, shame, drive, ambition, creativity, performance, attention and much, much more. I don’t even know if it has anything to do with PDA but I seem to be nodding my head a lot when other people who call themselves PDA are talking their truth. Many of these ideas and observations have been made by me for many years now, certainly long before I ever heard of PDA, others much more recently and have been influenced by the literature and discourse on PDA, ADHD and autism, but only in as much as it relates to what I have lived. I realised I was ‘Aspergers’ in the 90s, but only because that was the closest definition of what I was (what was wrong with me, in the view of me and many others at the time) that was available. I have a diagnosis of ADHD and a diagnostic opinion of autism (basically, the DISCO without informant reports), which mentions PDA in the report, so I have decided to share my views on this basis alone. Also because my son is his own brand of neurodivergent too, but probably not essentially PDA  Nikola Duncan.

A different type of parenting

A special guest post:

I wrote this earlier this year as part of our parental views for the EHCP applications and wanted to share it with you in the hope it helps you feel understood...none of us are alone in this even though it can sometimes feel that way ❤️

Parenting children who have special needs requires an almost super human love, where our expectations as parents are set aside and the needs of our children met first. Unless you have the privilege of raising a child with special needs, you simply can’t understand. Their daily struggle and yours is brutal. It is impossible to imagine the work and exhaustion of exhibiting patience, discipline and love while your child shows you extremely challenging behaviour day after day without any hope of them ‘growing out of it’ or it being ‘a phase’.

Our wonderful children are not average children with standard needs. They are special children with special and specific needs.

Our children have become tools of refinement in our lives. They struggle. This means our family struggles. There are marital arguments surrounding their little lives. Worry, anxiety and anger stem from their existence and secondary trauma is present in our home.

Love also comes in Tsunamis! Through the challenges it persists because love is a choice. We choose to love our children and raise them the best that we know how, but it doesn’t negate the pain that also marinates within.

It is hard to understand what it is like to ache for your child to be ‘normal’ to want them to have real friendships. We always anticipated our home would be filled with lots of friends and lots of happy family gatherings, meals around the table filled with laughter. It’s so hard when you don’t see your child connecting with others and are forced to live in isolation and segregation.

Unless you are raising a child with special needs, you don’t know what it is like to take everything you thought you knew about parenting and throw it out the window. Wondering what you are doing wrong and why nothing is working.

Standard parenting strategies do not work with our children. Our children don’t respond to time out or to typical consequences and rewards do little to help improvement. New strategies are needed, and they are hard to discover and even harder to implement as a united front day after day. There is a lot of trial and error. Failed attempts; defeat is a reality. Yet determination and love persist.

Unless you are raising a child with special needs, you don’t know what it is like to yearn for ‘normal’.

You don’t know what it like to wish your child could cope with being at a birthday party or play date, brownies, football, ballet or a playgroup without causing destruction in their wake.

There is a longing to be able to go for the day out or for a meal without anticipating a meltdown. The crowds will be too much? They will get overwhelmed or over stimulated? They are going to lose it? We must try to remind each other that restraint trumps exasperation and their brains don’t process the like other children’s brains. Their behaviors are messages from their brains, which are totally beyond their control.

Unless you are raising a child with special needs, you don’t know what it’s like to try everything - huge efforts and sacrifices, constantly wondering will anything make a difference?

The endless appointments with Doctors, Therapists, Social Workers, and Specialists are daunting. Will anyone give us tools to help our children? Is the therapy making an impact? Do we have to medicate our child? The constant questions, which bombard us daily and remain unanswered, are a constant worry.

Whether your child has Attachment Disorder, ADHD, PDA, FASD, SPD, ASD or any other diagnosis, as a parent of a child with special needs you live in a constant state of hyper vigilance and anxiety, risk assessing every waking moment of every singe day in an attempt to keep everyone safe.

We constantly question whether we are too strict or not strict enough. Are we being as therapeutic as we can be, are we good enough for them?
We love them so much so we just keep going.

The public meltdowns are horrific and the looks of disapproval are heart breaking but we have got to the point that we don’t care what others think now (well most of the time!). They don’t understand the pressure you are under every single day raising a child with special needs.

It has changed us. It has changed our family. Honestly there are momentary desires to escape - of course we never would, but the day in and day out is overwhelming an often we wonder how we will we physically and mentally carry on doing this for the rest of our lives? Will we survive this as a family of four? The guilt these feelings bring is haunting and unless you are raising a child with special needs, you could not imagine the determination it takes to start all over again every day but amazingly each day it comes. We to choose kindness when we are filled with anger, joy when we are feeling defeated, and hope when we can’t see the light at the end of the tunnel.

It is our privilege to be raising two amazing humans. We will persist. Defeat isn’t an option. Hope abounds. Love will triumph.

We fully accept we cannot reverse the organic brain damage and the early life trauma our beautiful little girl, suffers due to maternal alcohol and drug use. We cannot change her genetic make up and the conditions which may have passed to her from the people who created her.

We also accept we cannot chance the huge Attachment trauma our amazing little boy endures and that makes the world such a difficult place for him. He is constantly in flight, flight and freeze modes. To watch our little boy overwhelmed by a need to be in control of everything and everyone at all times is devastating. At three years old when most children are really only thinking about themselves and their needs his little body is flooded with cortisol making him hyper vigilant and full of anxiety.

We can do all that is humanly possible to give them an environment in which they can grow and learn. An environment where they feel safe, valued and accepted. We cherish them and celebrate them - our very special children deserve nothing less.

Your kindness and acceptance goes an awfully long way so we want to say a huge thanks to our dearest friends and family the people who support us, accept us and love us just the way we are! 

Issey Davis

Neuroception Through a Neurodivergent Lens

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:

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.

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.