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The Circuitous Path to Positive Autistic Identity

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 Mama bear 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 for me.

The word count also spoke to how sure I was, underneath my conditioned uncertainty.

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; what has been difficult for you and what support might make it less so?

A system that validates 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 so 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:

https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

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Honouring Differently Shaped Nervous Systems

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:

https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

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Neuroception Through A Neurodivergent Lens

Some parts of this article were first published on the 9th June 2020 for Libby Hill’s Smarttalkers blog.  This article includes additional personal reflections.  It also includes a series of questions that Libby asked me in relation to Neuroception, with a particular focus on PDA; Pathological Demand Avoidance.  PDA is described as a profile of Autism and it has a distinct set of strengths and difficulties.


PDA can be understood in a number of ways.  We can explore PDA by researching the diagnostic criteria which interprets observable behaviours.  We can look at PDA, as I find helpful to; through a Polyvagal lens.  We can also be curious about PDA as an identity, the essence of PDA, it’s function, it’s utility, it’s challenges, it’s beauty….


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 individual themselves, freedom and autonomy are deeply compelling needs.  When unmet, immense difficulties arise and some of these can be understood through a Polyvagal lens.


I answered Libby’s questions as a Neurodivergent woman and parent of an Autistic son who has been diagnosed with the PDA profile of Autism.   Alongside my passion for Polyvagal Theory, I am passionate about positive narratives in relation to Autistic identity and PDA.

In the interview we explored what Neuroception is and what an understanding of Neuroception offers us.

Jessica Matthews: “Neuroception, a term that was coined by Dr Stephen Porges, describes how our autonomic nervous systems take in information through our senses, without involving the thinking part of the brain. Neuroception is the process of ‘coding’ the information we receive as safe, dangerous or life threatening, which then determines our autonomic state. Our neuroception assesses the information inside our body, outside in the environment and between us, in our relationships (Dana, 2018).

Neuroception is informed by all of our senses.  8 of our senses are; interoception, proprioception and the vestibular system, as well as sight, smell, hearing, touch and taste. Sensory hyper sensitivities or hypo sensitivities will therefore impact our neuroceptive system too.

As a neurodivergent woman my ‘felt sense’ of safety or danger, can be very powerful and overwhelming at times.

For many Neurodivergent people, feeling safe inside our bodies can be challenging at times.  Our felt sense may be chaotic, difficult to specify, as well as to describe.

Felt sense is our internal bodily awareness made up of micro sensory experiences that we feel inside our body.

Internal cues of feeling unsafe, trigger our Neuroception of threat, just as external cues in our environment or relationships will.  “If our neural circuits perceive a threat; the principal human defence strategies are triggered” (Porges, 2004).

Neuroception is one part of the Polyvagal Theory, which has transformed the way we understand the autonomic nervous system. Polyvagal Theory explains that there are three distinct circuits which make up our autonomic nervous system. These circuits are arranged in a hierarchy and so we move through each in sequence.

The newest circuit, exclusive to mammals, is characterised by connection. It is often referred to as our safe and social state because it fosters safety, social engagement and playfulness. Our safe and social state is supported by warm facial expressions and vocalisations that are melodic or have a soothing rhythm. Vocalisations that support cues of safety, also have a particular frequency.

When my son was a baby, he responded fearfully to stimuli such as deep laughs, thunder and certain tones of voice, something he remains attuned to now. Dr Porges refers to these as “lower pitch sounds” which finely tuned neuroceptive systems are biased towards “in order to detect the movements of a predator” (Porges, 2017).

The second state is characterised by mobilisation and what we know as fight or flight.

The third and oldest state, by immobilisation, which is referred to as shutdown.  We can liken this state to the turtle who retreats into his shell for safety.

Moving between autonomic states is a normal part of everyday life, something we all do in small ways throughout the day, in response to everyday life. For some though, the movements between states are “more extreme and impact our moment to moment capacity for regulation and relationships” (Dana, 2018).”

Libby: What can we do if we suspect that neuroception is an issue?


I think the way we frame neuroception, fundamentally shapes our approach. If we categorise particular variations in neuroception as ‘faulty’, we align with a medical model. Because this feels incongruent for me, in my article last year I used the term ‘highly sensitive neuroception’ when exploring this in relation to PDA (Pathological Demand Avoidance). Others have also moved away from the term faulty neuroception.

Deb Dana uses the term ‘highly tuned surveillance system’ and Tracey Farrell recently proposed the term ‘finely tuned neuroception’. These references to ‘tuning’ are really helpful, because our nervous systems are tuned according to the experiences we have.  I also appreciate how this terminology respects the way our nervous systems safeguard us, exactly as we need them to, according to our individual differences and social contexts.

Published research into PDA so far, has considered the cognitive and behavioural components of PDA, but as yet has not explored the physiological components. I am interested in all perspectives of PDA, but I am particularly curious about the neurobiological mechanisms, as well as the role we can play as parents, educators and therapists to support the physiology of our children’s response systems.

I wonder about the somatic experience of having a protective response system that is frequently triggered by daily threats to one’s autonomy and freedom, in addition to the layers of sensory, social and information overload, that is part of the Autistic experience.

As parents, deepening our understanding about neuroception, and the 8 sensory systems, whilst becoming polyvagal informed, has really supported us to understand the individual cues of safety or danger that our son experiences, specific to his neurology. Reflecting on neuroception in the context of my own and my son’s sensory processing systems, has been really important.

Making changes to our environment and lifestyle, building in personalised sensory diets and a range of individually tailored supports, has also been really helpful. We prioritise play in calm and low arousal environments and have seen how making meaningful changes to this time with our son, really helps to support him. Play is described by Dr Porges as a ‘neural exercise’ that fosters the co-regulation of physiological state and supports physical and emotional wellbeing (Porges, 2017).

Organically, over time, we have also significantly modified our approach to parenting. We have rejected our western society’s preoccupation with normalisation and ‘fitting in’ and carved out a very different path.

I have been squeezed through, and indeed tried to squeeze myself through, enough normalising pipelines to know the harm such approaches can cause to the mental health and well-being of the neurodivergent mind and body.

Adapting our mindset has been a really critical aspect of how we have become more equipped to support our son’s finely tuned neuroception.

All too often our children’s adaptive behaviour is misinterpreted and responded to as intentional misbehaviour (Delahooke, 2019).

Through a Polyvagal lens and with an understanding of the autonomic nervous system, we can challenge these misconceptions and gain a deeper insight into the neurobiological basis of our children’s behaviour.

Deb Dana’s work supports us to understand that “from a state of protection; mobilisation or disconnection, survival is the only goal” and the door to connection becomes temporarily closed. Whereas “from a state of connection; health, growth and restoration are possible” (Dana, 2018).

When we think about Autistic children who have a PDA profile, it is so important to understand the adaptive nature of their responses and to recognise whether they are in a state of connection, mobilisation or disconnection.

Doing this not only destigmatises the behavioural responses that are listed under the PDA profile, but it also gives us the information we need, to respond in the most helpful way.
We have observed how demand stimuli, becomes less threatening for our son, when he is truly in connection with us, within a context that is shaped by mutuality, reciprocity and equal respect for adults and children’s autonomy and freedom.

Deb Dana helps us to understand The Polyvagal Theory and the hierarchy of our autonomic nervous systems in the form of a ladder. Thanks to Justin Sunseri LMFT, for his creation of this visual, based on the work of Deb Dana and Stephen Porges, which I include here to support this discussion, with his kind permission.

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 our autonomic state has on our behaviour, especially in children.


In flight or fight, the world can feel dangerous, chaotic and even painful. In this state we are mobilised, agitated and unable to settle into stillness. If it is not possible for us to flee or fight, our neuroception of threat will drop us further down the Polyvagal ladder into ‘fawn’, not shown on the ladder above.

Fawning is a mixed state too, which is made up of both sympathetic energy and shutdown (dorsal vagal). Fawning (Walker, 2013) is an uncharacteristic mode of “people pleasing” or deferring to the needs and wishes of others, whilst surrendering one’s own, in order to feel safer.

I talk more about fawning here:

https://pathologicaldemandavoidanceaprofileofautism.com/2019/06/25/pda-neuroception-the-five-fs/

‘Freeze’ is also a mixed state, as we can see in the Polyvagal ladder visual. If neither of these defence strategies are available to us, our neuroception of threat will drop us down to the bottom of the ladder, into a shutdown state.

When in shutdown, it can be very difficult, if not impossible, to respond. Our processing ability changes and our capacity to tune into our external world is ‘paused’.  For me, this can feel like my nervous system has formed a cocoon, enveloping me from any Neuroception of threat.  It is also a period of reprieve and recalibration.  I see this happen for my son too and in the same way that I would not wish my partner to disrespect my space when I am in shutdown, we hold space for his. 

In this third and oldest dorsal vagal state, we also find dissociation, immobilisation and collapse, otherwise known as ‘flop or faint’.

As a neurodivergent person, I see befriending the nervous system as an incredibly important task, but one that we may need to be curious about approaching a little differently.  Sometimes the ideal pursuit of ventral (safe and social) can have a fair amount of privilege attached to it.  In this context it can feel like a struggle to be patient with oneself in dorsal (shutdown). 

The low energy, immobilization and low tone in shutdown can create different stories and judgements.  I hear much ‘hurry up’ and harshness when I’m in shutdown. My internal critic prefers I dance in sympathetic!? The swinging pendulum between mobilisation (flight-fight) and immobilisation (shutdown), is so familiar to me.  Much of life has been here. But for my rest, there is great sanctuary in dorsal.

The challenge perhaps is to invite ourselves to embrace the sanctuary of shutdown as well as to welcome our need to mobilise again, as it arises. 

Our different ways of being, bring different paths.  Sometimes I find great freedom and restoration in dorsal. After time spent here, my energy and natural momentum returns and can take on a host of demands previously unattainable.


Equally, we need to honour our children’s nervous system shifts, support them with attuned and responsive relational safety.  I see this respect for different nervous system patterns in a similar way to respecting individual developmental timelines.



The neurodivergent mind and body has individual and beautiful wisdom, and I invite others, as I invite myself, to connect with and respect these.

As parents, before we became Polyvagal informed and made changes to our parenting and lifestyle, we had a very different construct of Autism and PDA.  Indeed, we needed to discard many of the narratives we had been handed from diagnostic clinicians and mainstream discourse, as we found them to be deeply invalidating and pathologising.

We found great value in learning how to map out what was happening in both our son’s nervous system and our own.  This process started us off on a different path, which has really helped us to more fully support all of our needs.

Our nervous system state and the way it communicates with another person’s is powerful. For neurodivergent children, the world can be a very demanding and overwhelming place, so we need, as parents, carers and therapists, to be able to open our hearts and arms a little wider. The science of Polyvagal Theory shows how connection, loving presence, warm smiles, gentle eyes, facial expressions and prosody of voice, are all key safety cues.

Whilst we know that the language, we use with our children is incredibly important, it is not just about what we say that matters, it is also about how we say it and what our nervous systems are communicating. We can’t ‘fake’ safety cues, it isn’t enough to ‘act’ calmly, we have to actually be regulated ourselves. We can’t kid the nervous system, neuroception will always detect incongruent cues in another person’s nervous system.

Children generally, but particularly those with finely tuned neuroception, are very skilled at cutting through our facades and any incongruence stays with them, just as it does for adults. This means that authentic communication is not just advisable, it is crucial.

Libby: What would you say to parents who are wondering if this is their fault?



Jessica Matthews: There is no fault or blame in any of this and as a parent who has felt under the spotlight, I get just how important it is to know this. It really helps when we can be compassionate with ourselves when things go wrong. Being kind to ourselves is so important for us as human beings, as well as for our parenting. Self-compassion also supports us to tune back in, to resettle before we regroup and repair.

I think it’s also important to know that our children would not benefit from having robotic parents, who appeared to glide through the day, untouched by humanity. We all lose our calm at times, I know I do, and so it helps to remember that when we go back to our children after these inevitable encounters, we can repair any relational rupture. We can ensure they know that they are loved unconditionally, no matter what has happened. When we do this and then hold space for our children, we strengthen their sense of safety and support them to complete their stress cycle.

As adults, we need support too though. Polyvagal Theory teaches us that connection is a biological imperative and a lifelong human need. None of us were designed to navigate this world alone, or to parent in it without support. However, in a society where we are all under more pressure, juggling more, with less time for stillness, it is not always easy to find this. For many neurodivergent families who have one, or more than one PDA family member, this can feel particularly challenging, as we are frequently misunderstood and often isolated with the challenges we face.
This is where finding a community of supportive adults who really “get it”, is crucial.

The times when our children are struggling the most, are often the times when we feel most scrutinised. This can also be when we receive an increased volume of ‘well-meaning’ advice. Many of us will have been told that we need to become stricter as parents, that we need to tighten our boundaries and support our children to ‘fit in’. This not only makes me feel sad about how much others are failing to see and understand, but also sad because these are the narratives that make it more difficult for us to tune into our parental instincts, to our deeper knowing, beneath our conditioning and traditional western parenting.


It is often the external pressures and systemic oppression, that make it more challenging for us to facilitate the calm co-regulation our children need so much of.

For Autistic people with a PDA profile, safety is highly contingent on the need to be autonomous and free. Through a Polyvagal lens, we can see that the PDA individual does not choose to avoid everyday demands, rather their nervous system prevents them from being able to respond.

When we become Polyvagal informed, we can see how, via neuroception, demands are often ‘coded’ as threats. Understanding PDA as a protective response system, that defends the individual’s need for autonomy and freedom, within a world that is already full of overwhelming multi-sensory stimuli, makes it much easier to understand how anxious, fearful and overwhelmed individuals with PDA feel, a lot of the time.

It also becomes easier to appreciate how, when meaningful environmental and relational adaptations are made, within a framework of deep understanding, that this very same group is able to thrive and achieve amazing things. With this, the many strengths and the individual identity of Autistic people with a PDA profile, can be fully seen and known.

Libby Hill: Would you say we are teaching masking when we want compliance at school or to fit in with peers?

Jessica Matthews: I would say that in any setting where compliance is the goal and children’s neurological needs are not fully understood, honoured and supported, that their nervous systems will trigger one of the principal human defence strategies. This can present as masking or as flight, fight, freeze, fawn or flop.

Having to mask and frequently having defence strategies triggered, has a huge emotional and physiological cost. When PDA individuals needs are unsupported, their neuroception of threat will increase, which will often send them further down the Polyvagal Ladder. It is important to know that children’s needs and difficulties are not only overlooked when they mask or fawn, but also when they are sitting quietly in a shutdown state.

Whilst schools continue to use isolation, restraint, exclusions, rewards and punishments, in an attempt to motivate children who can’t, rather than won’t, they fail to honour the evidence base about children’s health and happiness.

Understanding neurodivergent identity is about being attuned to, and nurturing children’s individual neurological needs and wellbeing; to support their lifelong physical and mental health.

For me, this has involved immersing myself in the Autistic and PDA community and current literature and research written by Neurodivergent adults, as well as embracing a paradigm shift to become Polyvagal Informed.

Libby Hill: And on that subject, I’m really pleased to be able to share the news that you are writing an exciting book about Polyvagal Informed Parenting and PDA, which is due to be published by Jessica Kingsley Publishing in June 2022. Is there anything you can share with us about the book before we end?

Jessica Matthews: Yes, absolutely. Some people know that I’ve been working on a larger piece of work for some time now and I was so pleased when Jessica Kingsley offered me a contract to publish this. The book will share the parenting approach that we have organically developed through a polyvagal lens, within a neurodiversity framework and with a continually growing understanding of our son’s and each other’s needs. Our Polyvagal Informed Parenting approach has helped us to support our son to feel safer in this demanding world.

The book will provide an understanding of the autonomic nervous system, an accessible overview of Polyvagal Theory and a working understanding of how we offer, what I call the Polyvagal Informed Core Conditions (PICCs) across different aspects of our parenting. I hope that the book will be supportive to other families who may feel as lost as we did at the beginning of this journey.


To hear more you are very welcome to join me on my Facebook page:

https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/


References

Dana, D. (2018) The Polyvagal Theory In Therapy: Engaging the Rhythm of Regulation. New York: W. W. Norton & Company

Delahooke, M. (2019) Beyond Behaviours: Using Brain Science and Compassion To Understand and Solve Children’s Behavioural Challenges. PESI Publishing & Media

Porges, S. W. (2004). Neuroception: A Subconscious System for Detecting Threat and Safety. Zero to Three 24 (5): 19–24.

Porges, S. (2017) The Pocket Guide To The Polyvagal Theory: The Transformative Power of Feeling Safe. New York: W. W. Norton & Company

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The Neuroception Gauge

Polyvagal Theory for me has been lens changing.  It explains the evolution of the autonomic nervous system and gives us a window into how the brain and nervous system regulate our physiology, allowing us to understand the often overlooked brain-body connection.

Polyvagal Theory sets out the three primary circuits that make up our autonomic nervous system.  It describes how these circuits are arranged in a hierarchy, that we move through in sequence.  The newest circuit of the autonomic nervous system is the vagal branch of the vagus nerve and this is referred to as safe and social. The second is our sympathetic adrenal system, which we know best as fight- flight.  And the third and oldest circuit, is the dorsal branch of the vagus nerve, which is often referred to as shutdown. 

Dr Stephen Porges coined the term Neuroception 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). 

I have found it helpful to visualise the process of neuroception on a gauge.  I created the Neuroception Gauge visual below so that we can see at a glance how our neuroception moves us between our nervous system states in both directions. 

The Neuroception Gauge visual is based on Dr Porges’ Polyvagal Theory and has been influenced by the work of Deb Dana, Justin Sunseri and Janae Elisabeth.

I have included the Five Fs (Flight, Fight, Freeze, Fawn, Flop) on the Neuroception gauge, so that we can appreciate where they sit in the hierarchy. 



Just as the hand on a pressure gauge indicates to us when pressure increases, the metaphorical neuroception gauge also indicates (to the autonomic nervous system) when danger increases.  It then moves in the opposite direction as the danger subsides and as a Neuroception of safety is restored.

The red arrow is bi-directional and moves through each state in sequence. 

The hand moves clockwise as our neuroception of threat increases and anti-clockwise as our neuroception of safety increases. 

• When we are in Safe and Social (Ventral), we are able to learn, connect, feel calm, safe and secure. 

• With a little flight-fight (sympathetic) energy, mixed with (ventral) our safe and social state, we are able to play actively.  We are motivated, driven and focussed.

• If our neuroception detects a threat, we will move into Flight – Fight (Sympathetic).  With this increased activation and mobilisation, we become agitated and unable to settle. With this we may try to flee, or if that is not possible, we may fight.

• If it is not possible to flee or fight, we will freeze.  Freeze is a mixed state, a blend of Shutdown (Dorsal) and Flight-fight (Sympathetic).  In freeze the body becomes still and fight or flight is essentially ‘on pause’.

• Fawning, is also a mixed state, a mix or ‘blend’ of flight-fight and shutdown.  When we fawn, we surrender our own needs and defer to the needs of others, in an attempt to protect ourselves from the perceived harm of an unknown response.  This can be seen as uncharacteristic people pleasing, and it is done in service of survival.

• If none of these defence strategies are available, our neuroception will move us more fully into Shutdown (Dorsal) our third and oldest state.  Here lies immobilisation and collapse, sometimes referred to as (Flop).

• The neuroceptive gauge visual shows how neuroception moves us between states, in both directions and in sequence.  It also shows the stop point at the top where the line is thicker.  From here, our autonomic nervous system has to go back through fight flight to return to safe and social.I’m interested to hear how the Neuroception Gauge visual works for others.For more on how this relates to Autism and PDA you can read my articles here: https://pathologicaldemandavoidanceaprofileofautism.com/2019/06/25/pda-neuroception-the-five-fs/

And here: http://www.smarttalkersblog.com/2020/06/neuroception-through-neurodivergent-lens.html?m=1

To hear me talk about Neuroception and how, through a Polyvagal lens, I believe that Highly Sensitive (or finely tuned) Neuroception May Be At The Heart of PDA, you can register for the online PDA summit here: https://positivepda.com/

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PDA AND SUPPORT

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.

To go to it, click the link below:

PDA DAY 15.05.2020

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Who Is The Author Of Changing The Narrative About Autism And PDA?

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 matters 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 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 too. So I decided this was one I could resolve and 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: https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/
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PDA And Language

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.  It is also non-threatening and directive. 

The language we use also needs to reflect 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 the way we communicate with our children and how we might start to modulate our approach.

I have found it really helpful to notice which phrases are more easily accepted by William and to keep these in mind for future discussions.  Equally, we pay attention to the phrases that elicit a stress response and making sure that we avoid these again.

At the most basic level, we noticed very early on that using the word NO elicited a very strong response in William and that this word needed to be avoided at all costs. No child likes to be told No, but for the PDA child 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 specific 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.

Non PDA friendly language includes direct questions, prompts and demands. This form of communication puts 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 a very important one to explore.

When we do integrate questions as part of our interactions with our children, we can phrase them in ways that are more PDA friendly. I have found that well worded questions, within narratives that are otherwise dominated by declarative language are received more easily. I have also found it helpful to notice which phrases are more easily accepted by William and to put these on our list. Equally, I notice phrases that elicit an anxiety response, however well worded they are and I make sure we avoid these wherever possible.

Declarative language is just one layer of a PDA friendly approach, but it is a very important one.

Here are some examples of simple statements using declarative language and some examples ‘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.

For more information, you are very welcome over at:  Changing The Narratives Facebook Page: https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

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HOW WELL DO WE SUPPORT AUTISTIC CHILDREN’S DEVELOPMENT OF EMOTIONAL LITERACY?

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, they learn 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 these safe and validating spaces, children are more able to learn what helps them to tolerate and make sense of the energy and sensations moving through their body’s.

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 what support they need in order to manage their feelings. When we experience distress and overwhelm whilst someone we love and trust is telling us that we’re alright really, and encouraging us to go back into the same space, 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. In either case, this is where parents of neurodivergent children, can learn so much from connecting with the Autistic community and listening to and reading the wealth of knowledge and experience that is available.

When we build our knowledge and insight, we are far better placed to reflect on what form of support our child receives. 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.


#EmotionalLiteracy #AutisticSelfAdvocacy #NeurodivergentSupport


You can also find more information, articles and links over on Changing The Narratives Facebook Page: https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/
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The Inherent Wisdom Within The Autistic Body

As I journey through my own process of exploring my Neurodivergent identity, I remain deeply conscious of the many value laden judgements, myths and stereotypes around Autism. Rejecting the medicalisation of Autism has been the least difficult part of my process. However, being aware of just how many misinformed social narratives there are, feels 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.

The range of strengths and skills within the Autistic population is vast and varied. This is a huge topic and there is much to say here. In this piece I want to focus on just one; 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 in their own unique way. 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, distress, excitement, or any other emotion that may feel overwhelming.

It 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 help to release sympathetic activation, which can help prevent us from becoming stuck in one state.

Regardless of your neurology, if you cannot recall a time when your body engaged in stimming, next time you feel stressed and anxious, I would invite you to tune into your body’s movements. You may discover that your body makes numerous subtle and unconscious repetitive movements too. You may notice how these feel and how they serve you.

I regard stimming as a deeply insightful aspect of the Autistic body and nervous system. It signals a connection between the the Autistic person’s neurobiology and their 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:

  • Aboriginal or tribal dances (watch a video and you may see what I mean).
  • Vocal stimming can be heard in sing along mantras, therapeutic chanting and even ululations that date back to the 16th century.
  • Elements of this wisdom can also be found in various neuroscientifically informed therapies such as EFT tapping, Qigong, Yoga and TRE (Tension & Trauma Release Exercises).

These are all activities that incorporate a degree of repetitive and regulatory movements and serve to bring calm and greater regulation to the nervous system.

Meanwhile, Autistic bodies are able to achieve this, without direction or instruction, if and when they are free to express their own stim movements. There is so much to be learned from the beautiful and healing act of stimming. It is also something that is incredibly joyful and an activity that simply feels good.

Isn’t it deeply sad 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. If some of our earlier natural movements or expressions were labelled as inappropriate, shameful or embarrassing, if moving our bodies in certain ways led to ridicule or rejection, it is entirely understandable that our connection with stimming was severed.

Rediscovering the beauty and value of stimming is incredibly freeing. Affording ourselves free self expression is powerful. Knowing and understanding how valuable stimming is to our health and wellbeing, increases the need for more widespread acceptance and for stimming to become something that is embraced and celebrated.

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Just Saying Hello Can Be A Demand Too

PDA can present in unexpected and subtle ways, as well as in more apparent and confronting expressions.

It includes not being able to do things you really want to.

Even things that could be seen as very small demands and expectations.

This evening my sister phoned and had her boys with her in the background (William’s cousins).

William excitedly said “Do the boys want to speak to me?”

I said “Oh hang on I’ll put you all on loud speaker.”

The boys both cheerfully chimed in; “Hi William”.

William froze momentarily before running away and hiding behind the sofa.

I knew what had happened and said “William is smiling boys and wants to say hi back. You all have a lovely evening ….”

I ended the call as quickly as I could without being rude, before going behind the sofa to find William crying.

He looked up at me and said “Mommy I really wanted to say Hi but I just couldn’t, once it was my turn I just couldn’t do it”.

PDA also presents itself in the everyday, taken for granted moments.

It’s not always dramatic incidents or challenging behaviour.

It can also be very quiet and very misunderstood.

PDA can be wanting to connect, but not always being able to.

Sometimes meeting very small demands or expectations can feel too overwhelming, especially when the day is coming to a close and all your demand spoons have been used up.

It is so important that we know PDA is Can’t, not Won’t!

And that not being able to do things such as saying hello when it is expected, is not a sign of rudeness, but a sign of anxiety and flight in the face of an unavoidable demand.

💛

You can also find more information over on our Facebook Page

https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/