Jessica Matthews: Autistic writer, Independent Researcher and Advocate, passionate about how we support the development of Positive Autistic identity in ourselves and our children. My writing is shaped by my lived experiences, by my connection with my son, and by my background working as a Therapist (BSc Hons Psychology degree, Post Graduate Diploma In Integrative Counselling, Post Graduate training in Clinical Psychology). The title of my Facebook page and blog, arises from my concern about how we talk about Autism and PDA and how these narratives impact our sense of 'self' and well being."
“Adults say sorry when they cry in front of each other. Should I say sorry too Mommy, or just not cry in front of those people?”
-A 7-year-old child-
I want to speak a little about *normalising emotional distress*.
Yesterday I wrote a post about what happens when we cry. It read: What a different world it would be if more children grew up with the message that crying = strength.
Our bodies gift us the wondrous healing power of pain killing tears. How incredible is that? I have this hope that more children grow up seeing strength in crying. Rather than being falsely taught that crying is something to hide or stop.
I carried on reflecting about how our individual responses and the wider cultural response to the very necessary self-regulatory power of crying, is met with so much discomfort in our society.
Those of us who cry more easily and children who cry frequently, are usually highly sensitive beings. Sensitivity has a genetic component that brings with it a higher degree of reactivity and what might be described as a more intense experience of the world. Children who are deep feeling beings with tender hearts, can be extremely sensitive to their environment.
Gentle, attuned and deeply compassionate care, can be a game changer for sensitive children. To be seen, known, understood and accepted as we are, can be transformational for all human beings.
Acceptance can feel rare in our neo-liberal, capitalist and individualist society that prizes robustness, rational behaviour, success, competitiveness, 100% attendance scores, standardised testing and reward-based systems, to ensure conformity and compliance. There is no room for emotionality here, for:
“Neoliberalism is not simply a name for pro-market policies, or for the compromises with finance capitalism made by failing social democratic parties. It is a name for a premise that, quietly, has come to regulate all we practise and believe: that competition is the only legitimate organising principle for human activity” (Metcalf, 2017).
Our culture not only calls on us to be so many things, but it also feeds an enormous discomfort with open displays of emotion, such as crying. All too often crying is perceived as weak and many of us have grown up hearing phrases such as: ‘Big boys don’t cry’,‘she’s turning on the water works again’, ‘man-up!’ and ‘don’t’ be such a wimp!’.Frequent crying gets associated with phrases such as ‘he’s too sensitive’, or ‘she’s really high maintenance, or ‘they’re Just. Too. Much!’ This messaging is much more harmful that we might first think.
Few of us have been raised or supported to see crying as an important or indeed integral part of our communication and regulation. Our cultural relationship with public displays of distress, can mean that we find ourselves apologising for crying in public. With widespread discomfort around emotional distress, we can indeed find ourselves saying sorry on autopilot.
In such a context, it is understandable that many of us feel, or have felt triggered when our own children cry, especially if they cry ‘a lot’. It can feel confronting to be faced with the feelings this brings up, feelings that may be associated with childhood wounds, being invalidated when we cried as children and the unmet needs we may still carry.
As painful as it can be to do so, some of us may have spent time deconstructing the messages we received as children. Reformulating our relationship with our emotions and self-expression.
As we strive to be part of the changes we want to see for our children, we may already have asked: What would feel healthier for us, and more aligned with the kinds of messages we would choose to share with our children?
I feel so much sadness about how much we all miss out on, in a culture that struggles to honour our children’s ability to feel emotions more deeply, and to express them authentically. There are many unrecognised qualities that are part of being so deep feeling, such as being beautifully attuned to how other people feel, being an empathic friend, and being skilled at detecting incongruence.
When I think about autistic masking in the context of a neuronormative culture so afraid of authentic self-expression, I see yet another layer of why. Why Autistic bodyminds make the daily assessment that it is too unsafe to show up as we are. In a world so terrified of being ‘too much’, of being ‘different’ of stepping outside of so called social ‘norms’, it is no wonder that many of our bodymind’s instinctively, reflexively, mask just to survive.
We have so much to learn from our children’s ability to shine a light on the parts of life that no longer serve our needs, aspects some of us may have become dissociated from. When we hold safe space for more of our children’s fully authentic expressions, the rich benefits begin to show themselves to us.
None of this is easy to do, especially in the moments that challenge us the most. The responsibility of parenting, of childcare and education, is all encompassing. As we watch our babies grow, and keep on doing the best we can, we also hold onto so much hope that their struggle will be less.
All of our unrecognised labour, love and co-regulatory care through these parenting years, all of our efforts to model the healing power of expression rather than suppression, will become part of our grandchildren’s heritage too.
It was so nourishing to attend the 2020 Embodiment Conference this month.
The range and quality of speakers was incredible.
I was particularly looking forward to listening to Dr Stephen Porges.
When he covered “Fawning” within his presentation I was delighted.
I had not heard him speak definitively as to the physiology of fawning before.
The term Fawning was coined by Pete Walker. He examines this in his 2013 book ‘Complex PTSD: From Survivng To Thriving’.
Whilst the fawning response is one that resonates with many of us, it can be challenging to integrate an acceptance of it, if we perceive it as ‘chosen behaviour’.
I mentioned in my 2019 article that I believed that the literature on fawning sits supportively alongside the literature on Autistic masking.
I stand by this and feel we are only just beginning to gain the information we need to deepen our insights on this.
When I reflect on my own experiences of masking, there is so much resonance with the information here on fawning.
To hear Dr Porges speak to fawning as reflexive, as a repsonse that is embedded in the body, in the same way that dissociation and death feigning reflexes are, was very powerful indeed.
I believe that as this information becomes more widely known, it will help us to more fully support our Autistic and PDA children, especially if they mask/fawn at school, or in other settings.
If a child neurocepts a lack of safety and they do not have another option available to them, fawning may well be their autonomic response.
If a child masks / fawns in one setting, but then shows significant distress once they have left, we need to feel empowered to challenge the tropes about how “they were fine while they were here”.
In the same way that fight, flight, freeze and flop are automatic in the face of a Neuroception of threat, so too is Fawn.
Dr Porges explains all of these as “adaptive reflexes”.
I invite us all to pause and become really curious about the wisdom inside our bodies and our childrens.
This curiosity may support us to truly appreciate why such responses are both necessary and understandable.
Having spent the last few years consciously processing my neurodivergent identity and many more before that, doing so unconsciously.
Examining layers of internalised ableism, invalidation trauma and imposter syndrome.
At times it has felt like free falling without a parachute.
This all-consuming path has been exhausting.
As someone whose life has been shaped by an inherent fascination with the psychology of human beings,
Who ended up studying Psychology as an undergraduate and postgraduate,
training as a therapist and working with many Autistic young people and adults,
I did not realise that I was Autistic too.
My own self-identification only began when I became curious about whether my son might be Autistic.
From here, from this place of instinct,
connection and resonance, a significant processing journey began to unfold.
There is something quite transformational about loving your child with every unconditional fibre of your being.
About seeing their radiant neurodivergent beauty and being in awe of their authentic presence.
And then recognising how much you have learnt to edit yourself, to mask and fawn.
Once I connected with this, I felt fired up and committed to doing my own work.
There is nothing quite like an analytical Autistic person on a mission!
After doing lots of reading and self-exploration, I sought further reference inside of the Autistic community.
What I found far exceeded information and knowledge.
What I experienced was refuge and further layers of resonance.
There were times as I listened to Autistic advocates speak, that I found myself moved me to tears.
How had I not connected with more of this before?
Had I been too armoured?
Too guided by textbooks?
Too afraid?
Had the boundaries of my own social context made ‘difference’ so fiercely off limits?
Each time I wanted to flee and hide, I held onto the knowledge that my own self-acceptance and self-love would impact my son’s development of his.
With over 40 years to re-process, this endeavour was not going to be a once and done kind of thing.
As I considered pursuing a diagnosis, I wrestled with my conflicting thoughts and feelings around this.
I did, and do, see self-identification as equally valid and important to respect.
Inside me though, there was a strong need for confirmation.
For some of us, and for me, this need was tied to old wounds.
The many times that I had been overwhelmed and really struggling, but had been described as ‘too much’, ‘too sensitive’ and ‘too intense’.
Invalidation trauma can undermine our own truth and our confidence to stand in it.
Not being known, understood, and accepted just as we are, can mean we compromise pieces of our self, in order to fit in.
Ultimately, I felt that I needed to seek confirmation formally.
Having decided to book an assessment, I was sent an enormous amount of pre assessment paperwork.
Once completed, my answers totalled 20,000 words.
The process of writing was cathartic and the word count spoke volumes.
In the lead up to the appointment, the wait became increasingly agonising and my anxiety grew.
I connected with friends who had already been through this process to get me through.
Their beautiful validation and the ways in which they embody positive Autistic identity kept me going, until the day of the assessment.
At the end of the process and after a long interview,
I was indeed, identified as Autistic.
We shared a gold themed family celebration and cake to match.
My son’s reaction when I told him was the most special part for me.
He threw his arms around me, squeezed me tight before getting up and punching the air with joy.
“Yes! You’re Autistic too Mommy!”.
Celebrating was not just about me; it was also about our boy and others still unidentified in our family.
Part of me wants to end this piece here.
To conclude that having my Autistic identity confirmed, has been an entirely positive and affirming experience.
But this would not be true or fair.
I believe that the messy realities of this experience, pre and post diagnosis, need to be spoken about more.
I doubt many people leave the assessment process, as it currently stands, free from conflicting feelings.
I was lucky enough to be assessed by a warm, gentle and kind person, for whom I have a great deal of respect.
The experience of being diagnosed within the boundaries of the DSM though, was incredibly tough.
My Autism assessment report spoke to the pre-determined ways in which historical Autism ‘experts’, and the authors of the DSM, have decided that I, and we, are less.
Less than the ‘neurotypical’ majority; a subjective concept, without scientific basis.
After writing and speaking to my Autistic identity, in meaningful and contextualised ways across my pre-assessment paperwork, and in the assessment interview,
I was floored to receive a report so dominated by the DSM criteria.
In preparing myself for the assessment and throwing myself so fully into sharing all that felt important and relevant, I had not prepared myself for how this would feel.
In being identified as Autistic, I expected to feel some relief.
I expected to feel that my struggles had been honoured.
I expected to feel seen.
At times in the interview, I did feel these things.
But in the aftermath that followed, starting with the report, I felt dishonoured and flooded with conflicting emotions.
Even though I had critically reflected on the DSM criteria for Autism.
Even though I was clear about the pathology paradigm.
And even though I knew that the assessor would be working to these criteria in order to assess me,
I had not fully appreciated how I would feel reading my life experiences reduced to a checklist.
To a list of ways that I was not as worthy, as some arbitrarily and narrowly defined construct of normalcy.
We all deserve something better than this.
We are not a list of symptoms.
We are not disordered or broken.
We are beautiful, complex and deep feeling beings,
Who experience the world in our own unique ways.
We deserve to be honoured for all that we are.
We need access to a system that instead of asking what is wrong with us, asks about our strengths and resources, as well as what has been difficult for us.
It is so important to make meaning out of our experiences, to explore the ways in which we are different and for our differences to be validated.
It is also really important to explore the parts of self that have supported us to achieve in all the ways that we have.
To value the understandable and adaptive ways we have survived.
The DSM de-contextualises our difficulties and lets systems off the hook.
The time for a different way and a different system, is long overdue.
We need to be able to explore our Autistic identity in ways that do not break our hearts.
We need to hear and read the confirmation in such a way that frees us all to punch the air and say;
“Yes I am Autistic too!”
A warm welcome awaits all over on my Facebook page:
Whilst we might know that all of us process, or respond to emotions in different ways, all too often we still make value laden judgements about how ‘well’ we deal with our emotions.
It is little wonder, when so few of us have been raised to honour our emotions, exactly as they are, or to cherish the ways in which our nervous systems serve us.
At times when I feel wronged, or when I feel overwhelming emotions, I feel my nervous system shift into shutdown. At these times, before I am able to sit with my feelings, or to consider what they are speaking to, dorsal vagal (shutdown) steps in.
In a mind that never stops whirling, this is my nervous system’s protective response. It is a way of offering my mind and body respite from feeling so much. My nervous system may also have developed deeper grooves towards dorsal. Those of us who feel ‘too much’ in a world that values modest emotional expressions, may learn to find sanctuary here.
In the same way that there is growing recognition of different sensory processing systems, it feels really empowering to engage with narratives that recognise different emotional processing systems, without references to deficit or disorder.
There is such a need to leave behind value laden judgements such as ‘too much’ or ‘too little’, ‘over-reacting’ or ‘being too sensitive’.
All of our individual ways of feeling and responding to our experiences have value. Honouring the beauty of differently shaped nervous systems is also about honouring each of our nervous system states and the different ways each of us move between states.
The state of shutdown can sometimes be viewed as ‘less’. Less connected, less able, less ‘productive’. I have been thinking about how my relationship with shutdown feels.
Dorsal vagal can often be my go to. As well as being a safe haven, it offers me the opportunity to harvest strength. I often re-emerge from dorsal feeling more connected and re-fuelled. Shutdown provides a critical pause from feeling so much all of the time.
After a little time in the resting place of my dorsal vagal nest, I benefit more fully from that walk in the countryside, from that Qigong practice, from spending time writing or from being with my loved ones.
There are times however, when I can get ‘stuck’ there. Times when, like all of us, I need to reach out. A little ventral vagal injection from someone else is often what I need. Today, hearing the warmth and solidarity in a friend’s voice, gave me the injection of safety and connection that I needed, to move forward.
We don’t need to ‘other’ any of our nervous system states. Our autonomic nervous system responses operate in service of our survival. It is OK to process our experiences in our own time, at our own pace and in our own way. And when we are finding it more difficult to do this, it is absolutely OK to reach out for more connection and support.
🙏💛
You are very welcome to join me over on my Facebook page:
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, with 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….
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 PDA individuals, freedom and autonomy are deeply compelling needs. Understanding this through a Polyvagal lens offers us an alternative lens.
I answered Libby’s questions with the help of this lens, and as a neurodivergent woman and parent of a neurodivergent 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.
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 our senses, including interoception, proprioception and the vestibular system, as well as sight, smell, hearing, touch and taste. Sensory processing differences 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. Our felt sense may be intense, chaotic and difficult to specify, as well as to describe.
Felt sense is our internal bodily awareness made up of micro sensory experiences 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 not just about defence, it is also a normal part of everyday life, something we all do in small ways throughout the day, in response to the needs of our body and 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 a family, deepening our understanding about neuroception, and the 8 sensory systems, whilst becoming polyvagal informed, has really supported us.
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.
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 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 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.
At the top of the Polyvagal ladder is our safe and social state (ventral vagal). Here, we feel safe, connected, calm and grounded. In our safe and social state, we are able to enjoy time alone and with our passions, or with family, friends and pets.
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 autonomic state has on behaviour.
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 dorsal.
In this place of 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 the world.
It is also a period of reprieve, recalibration and energy conservation. 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 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. For my rest, there has been great sanctuary in dorsal.
Sometimes I find great freedom and restoration in dorsal. After time spent here, my energy and natural momentum returns and can achieve a host of demands previously unattainable.
We need to honour our children’s individually shaped nervous systems, support them with attuned and responsive care and relational safety. Centering coregulation is key here.
For me, respecting different nervous system patterns, includes respecting individual developmental timelines.
The neurodivergent mind and body has individual and beautiful wisdom, and I want to encourage curiosity about this.
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. Discarding many of the narratives we had been handed from medical and mainstream discourse, has helped us carve out a new path, away from deeply invalidating and pathologising rhetoric.
Learning how to map out what is happening in both our son’s nervous system and our own has been incredibly helpful.
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 and co-regulation, 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 recognise that we are all just doing the best we can. It really helps when we can be compassionate with ourselves when things go wrong, when we dont respond as we intended to. This is important for ourselves as human beings, and for our parenting.
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 we are able to support our children 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. I talked about Fawn in my article Highly Sensitive Neuroception May Be At the Heart of PDA.
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 our systems continue to use isolation, restraint, exclusions, rewards and punishments, in an attempt to motivate children who can’t, rather than won’t, the science of safety and connection is being overlooked, children’s individual nervous system needs are not being met, and their wellbeing and lifelong physical and mental health is put at risk.
Libby Hill: And further to this interview, 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. Through a nervous system lens, we have been able to more fully support our whole family’s wellbeing.
The book will provide an understanding of the autonomic nervous system, an accessible overview of Polyvagal Theory and examples of my applications of the theory to support our everyday family life. 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:
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
Below is the link to a PDF of my article written for PDA Day 2020. Over 2 pages, the article provides an introduction to some of the important considerations when supporting someone with a PDA profile of Autism.
The article provides brief examples of published insights into PDA and a summary of my own. I have found it helpful to build a Polyvagal informed insight into PDA and I share a snapshot of this in the article too.
I hope the article reaches whoever needs to read it.
I’m so proud of my son, so proud of our family. I long to share pictures of him on here and celebrate how amazing he is. I love this space and being able to connect with you all, so I would love nothing more than to be able to share more than I do. But I made a decision at the start of this journey to protect William’s online identity and footprint.
He cannot yet give fully informed consent for me to share his pictures and more individual information and so I take out any identifying details and make sure there is no online paper trail.
Some of you may think I’m hiding or not being real, but hopefully more of you understand and respect that we all make different decisions and that’s ok.
Maybe one day, William will take an interest in this work and it will matter to him too. Perhaps he will want to join me in this quest, or start his own. If he does, he will make an amazing advocate! His footsteps are for him to make though and I will support him in whatever he chooses to do with his life.
In the meantime my job is to ensure that he develops an authentically positive Autistic identity and as I write about our lives, to use the same litmus test every time. This test is in the form of a question to myself: If my son reads this at any point in the future, will he feel loved, honoured and respected in the narrative? If the answer is yes, I press share.
But the issue of remaining anonymous makes it more difficult for me to connect with others at times, for not everyone is comfortable with me being unknown. And I appreciate that, I really do.
The other difficulty with being anonymous is that people can’t reference my articles. And this is an issue I can more easily resolve. Here’s how. 💛👇
It is clearly not possible to name an author if they keep their name hidden. This work is incredibly important to me, I dedicate many hours to it and it is only right that my writing is referenced properly.
To make this possible, I have chosen a pen name / pseudonym, which I will now use across all my writing…
Jessica Matthews, Author of Changing The Narrative About Autism And PDA. 💛🙏
If you would like to read more you can also join me on my Facebook Page:
What kind of language might be considered to be PDA friendly?
Language that is underpinned by understanding, respect and acceptance of children’s individuality, is much more likely to be PDA friendly.
The language we use reflects our authentic meaning. Carefully choosing words in order “to get” something to happen, will be detected by our astute and attuned children.
Incongruent communication creates uncertainty and anxiety and is at odds with our children’s need for truth.
It is important that we find authentic and organic phrases that are for our children and not simply lifted from a “textbook” approach.
That said, reflecting on working examples can help us to consider how we communicate with our children and how we might start to modulate our approach.
I have found it really helpful to notice which phrases land more easily for our son, as well as to pay attention to the phrases that elicit a stress response, so that we can make sure we avoid the latter.
At the most basic level, we noticed very early on that using the word NO elicited a very strong response in our son and that this word needed to be avoided at all costs. No child likes to be told No, but for some children the word NO is not just difficult, it is incredibly threatening.
Some exemplars of PDA friendly phrases, that may help spark further ideas and reflections on this topic include:
Sharing our thoughts out loud, such as:
I’m wondering … I noticed that… I was thinking we could… I had an idea about…
Using open invitations can be less anxiety inducing than suggestions or prompts.
Use of the word we is also really helpful.
We could choose a game to play together.
Using declarative language.
Declarative language invites discussion rather than demanding it. It helps put the listener at ease and promotes a sense of relationship through the sharing of thoughts, feelings and ideas.
Declarative language can be thought of as a form of commentary. It is a non threatening way of creating shared experiences through descriptive language.
Declarative language can be used to share knowledge in a relaxed and open way.
Declarative language can also reduce power imbalances in relationships, such as the parent-child or teacher-student relationship, where an inherent power imbalance exists.
The infographic below provides a basic overview of how declarative language differs from other common types of language.
By contrast, direct questions, prompts and demands put immense pressure on the nervous system and can feel very threatening.
I found it interesting to reflect on how I used to use declarative language automatically with my peers, but less so with children. Making this necessary shift in my communication has definitely helped my son. 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.
Declarative language is just one layer of a PDA friendly approach, but it is an important one to explore.
Outside of the use of declarative language, I have found that well worded questions, within narratives that are otherwise dominated by declarative language are more readily received.
Here are some examples of simple statements using declarative language and some examples of ‘PDA Friendly’ questions.
Reflecting on the language we use with our children, is just one part of our connection with them. It is yet another part of the rich tapestry that contributes to relational safety.
When we stop a child’s emotions in their tracks, for example by telling them to “stop crying”, or that they are fine when they are not, we teach them that it is unsafe to feel and express their experiences.
Responding to our children with these and similar phrases is not a reflection of how much we love and care for them, rather it is a reflection of our conditioning and relationship with our own emotions.
As the American poet Maya Anjelou graciously wrote; we do the best we can until we know better. Then when we know better, we can do better.
It is never too late for us to start developing a different relationship with our emotions. We all have the potential to unlearn, relearn and develop new skills and ways of being.
Receiving support to do this from another safe and trusted adult, either in therapy or in another safe and co-regulatory relationship, can really support this journey for us as individuals and as parents who want to support our children differently.
Each time we are able to really validate our children’s emotions, we provide an opportunity for them to recognise, understand and crucially TRUST how they feel.
Providing them with this, allows them to experience a felt sense of the full range and depth of their emotions.
In safe and validating spaces, children are more able to learn what helps them to tolerate and make sense of the sensations inside their bodies.
GASLIGHTING NEURODIVERGENT EXPERIENCES
When a child is experiencing emotional dysregulation, but is told that they are fine and that they just need to “get on with it”, their opportunity to get to know, trust and understand the experiences within their body is occluded.
Not having a safe and unconditional space in which they can make sense of their experiences, adversely affects their developmental process, in terms of learning to recognise how they feel and how to advocate for their needs.
When we experience distress and overwhelm whilst someone we love and trust is telling us that we are OK really, when they encourage us to carry on regardless of the pain we feel, emotional literacy will be the last thing we have the capacity to develop.
Sometimes adults and parents are unable to fully support a child’s development of emotional literacy, because the child’s nervous system is either very different to their own, or incredibly similar, but in a way that the adult does not yet recognise.
Parents of neurodivergent children can learn so much from connecting with the Autistic community and listening to and reading the work of Autistic writers.
When we build our knowledge and insight about both neurodivegent and ‘neurotypical’ experiences, we are far better placed to support our whole family’s needs.
Emotional literacy programs for example, that teach children to name and recognise their emotions, and how to develop their self awareness, need to be delivered by practitioners who are either neurodivergent themselves, or authentic and well informed allies.
We need to be able to reflect on what is being offered to our children and what impact it may have. For if such programs re-enforce a child’s experiences of being gas-lit and misunderstood, the loudest message they are likely to receive will be that they are ‘less’ or ‘other’.
I find it interesting to think about what seems to be a very strong link between emotional literacy and self advocacy skills.
For how can I tell you that I am not ok, or describe how I feel and what I need, when each time I have struggled before, I was told “enough” already, or that my feelings were invalid? How can I feel safe asking for help, or even know what help I might need, when my conditioning has taught me to hide my tears, carry on and mask?
It is really helpful and important to know that the more we hold safe space for our children to explore their own emotions (and for each other in our adult relationships), the more opportunities we create for our children (and ourselves) to build a sense of what they (and we) need.
Rejecting the medicalisation of Autism has been the least difficult part of exploring my Autistic identity.
However, being aware of just how many misinformed social narratives there are, is more problematic. I have found that this can be more easily modulated by:
1. Making connections with other Autsitic people who embody positive Autistic identity.
2. Reading and listening to the work of Autistic adults.
3. Processing my own experiences though writing.
In this piece I want to focus on stimming.
Stimming is a naturally occurring, regulatory and repetitive movement that feels enjoyable and calming.
Examples include spinning, leg bouncing, hair twiddling, tapping, flapping, shaking, pacing, watching repetitive visual stimuli, and many, many more.
Everyone stims. Neurodivergent and people who are described as having the predominant neurotype.
Each person stims in their own unique way, but more often than not Autistic people stim more frequently.
For some, it is a private and sacred act, for others it is something their body needs to do across the whole day, regardless of context.
Stimming is highly beneficial to any nervous system, but especially to the Autistic nervous system.
For me, stimming provides a way of shaking off fear, anxiety or distress and a way to being with and expressing excitement, joy and awe.
It can be a part of expressing any other emotion.
Stimming allows the body to feel safer and more grounded. It frees the body from some of the energy arising from strong emotions or experiences.
Stimming can also help release sympathetic activation, helping us to complete our stress cycle.
Regardless of your neurology, if you cannot recall a time when your body engaged in stimming, next time you feel stressed and anxious, I invite you to tune into your body’s movements.
You may discover that your body also makes numerous subtle and unconscious movements that we would refer to as stimming.
All bodies do.
You may notice how these movements feel and how they serve you.
I regard stimming as a deeply insightful expression of the body’s wisdom.
For me, stimming is a connection between the present moment and our nervous system’s evolutionary wisdom.
This wisdom is something that feels otherwise largely inhibited in modern, western society.
Stimming movements can be seen at the heart of other cultures, for example in:
A range of aboriginal dances.
Vocal stimming can be heard in sing along mantras.
Therapeutic chanting and ululations date back to the 16th century.
We can also find elements of this wisdom in examples such as EFT tapping, Qigong, Yoga and TRE (Tension & Trauma Release Exercises).
All these activities incorporate a degree of repetitive and regulatory movement, and serve to bring calm and greater regulation to the nervous system.
Meanwhile, all of our bodies can achieve this, without direction or instruction, if and when we feel free enough to express ourselves fully.
Stimming can be incredibly joyful and an activity that simply feels good.
How sad, misguided and reprehensible it is then, that so much attention has been focussed on the repression and punishment of stimming in the Autistic population.
For late self identifying Neurodivergent adults, like myself, rediscovering stimming is powerful.
Rediscovering the beauty and value of stimming is incredibly freeing.
Affording ourselves free self expression is powerful.
Stimming not only needs to be radically accepted, it also needs to be radically embraced and celebrated.
Declarative Language can be a much less demanding form of communication. It is less directive and invites engagement.
You can also find more information, articles and links over on Changing The Narratives Facebook Page: 
