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Post Diagnostic Reflections

A child’s Perspective

I want to say so many things to you, my family.

This feels so uncertain right now.

I felt so scared of the room

The process

All those questions.

The lists and benchmarks

They meant nothing to me.

What do they mean to you?

Will we all leave here

With an ‘other’ me?

Will you see me as less?

Will you want me to be ‘changed’?

Will you sign for them to mould and shape me?

Into someone I’m not?

Someone I was never meant to be.

Or, will you take my hand,

Knowing more, but not seeing less?

Please don’t stop seeing me!

Don’t change your perception,

Or belief in who I can be.

For with the right environment,

Unconditional love and support,

I can be all the things you saw before.

I am all the things you saw before!

Except now we have a name for my neurology.

A title for my identity.

My differently shaped nervous system makes more sense.

Please don’t respond with sadness.

Please don’t leave here with all those medical words in your head.

Please leave that terminology at the door.

Let us spend our time instead,

Understanding my essence.

Understanding my needs.

Understanding what supports me to thrive.

For all that you saw before,

Is still right beside you!

Loving you and believing every word and description you use.

Please celebrate me!

Celebrate my neurodivergent identity!

Teach me how to know my worth.

Teach me how to be proud of all that I am.

For in your unconditional and embracing arms

I can be free, to be all the things I’m meant to be.

💛

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PDA And Self Directed Learning Through Online Play.

You know how our children take us on journeys we would otherwise probably never have taken?

Well, over recent months I have been on yet another of these, but this time into the world of Minecraft.

William taught himself to play, with a little guidance from YouTube.

William then delighted in teaching me how to play!

I have been really blown away by it and not just because William absolutely adores it, but because it is also an incredible learning resource.

It is packed with opportunities for learning and development:

Today I witnessed creativity, design, numeracy, literacy, problem solving, expressive language, receptive language, communication skills, social and emotional skills, the list goes on.

Through the wonders of video calling, my son and his friend have been playing Minecraft together most days, interactively. I scaffold the process as needed and remain on hand to head off the inevitable glitches.

My son and his friend stay very much in the driving seat though. (With the necessary and important exception of the online safety measures we have put in place to prevent connections with unknown people).

Minecraft, as a shared passion and interest, have really strengthened William’s connection with his friend. The known aspects of the game, give rise to sufficient predictability and it’s creative scope means that there is still enough novelty too.

The game also provides some genuine equity. There are no gross motor skill imbalances, less developmental stage related imbalances and there are few imposed rules (depending on setting).

It really creates the kind of safety that opens up learning and development in a way that is quite magical to witness.

I’ve had some heart burst moments listening as new language has been emerging, words have been typed out and some beautiful reading and communication has taken place.

It has facilitated some lovely co-operative play and some generous and thoughtful interactions.

Given that screen time often gets such bad press, its been great to see just how valuable a tool, online learning can be. We still strive for balance, and I remain conscious of how much more time I would like us to have outdoors, but when I see the strengths this form of play also offers, it makes it more comfortable for me to also trust the value this form of self directed learning online offers.

💛

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Covid 19 Has Flooded The World With A Powerful Neuroception Of Threat

How Are Our Nervous Systems Responding?

The term “Neuroception” describes how our brains distinguish whether situations or people are safe, dangerous, or life threatening (Porges). This process occurs in a split second and can be thought of as a subconscious process.

What we neurocept as safe, dangerous or life threatening, depends on the way our individual nervous system’s receive and interpret incoming information. Our environments, relationships, ACEs, sensory processing systems and individual neurologies, all play a significant role in our neuroceptions of the world.

In these unprecedented times, our senses would have to be completely shut down, for us not to neurocept the threat of Coronovirus. We have a worldwide stream of information alerting us to its threat; the deaths it is causing in vulnerable groups and the social distancing and lock-downs necessary to protect the collective good. Covid 19 has given rise to a worldwide neuroception of threat and many of our brains and bodies are feeling flooded by its impact.

Our communities are scrambling around for cues of safety, desperately hoping for and needing to find something reassuring to hold onto. Unfortunately, because everyone else around us is also frightened, the safety cues that we are searching for are thin on the ground. Our homes are understandably going to be fraught with anxiety at times and especially as the worrying implications of this disease continue to saturate our lives.

Despite the many great efforts we are all making to communicate calm and soothing sounds, and to find more creative ways of connecting, it is still much more difficult for us all to settle into stillness and safety at this time.

Our towns and cities, our supermarkets, and even our online forums are seeing people’s threat responses being triggered left, right and centre. People have been fighting over metaphorical life jackets and whistles and have literally been stock piling food and loo roll. And whilst our intentions are much more about stockpiling compassion and connection, our threat responses are understandably taking over at times.

Our nervous systems are also reeling from how counter-intuitive it is for us to be trying to make connections from a distance. When we are worried for our friends and family, our nervous systems cannot push aside its patterning. Our brains and bodies have learnt to establish and share safety through face to face interactions.  Eye contact and facial gestures provide critical cues to our social engagement systems. We also show and feel safety through safe physical contact, with a loving embrace or the warm touch of a hand.

Despite understanding cognitively that staying home is essential and necessary for the collective good, that whoever we see today will, in all likelihood, effect the intensive care beds in our hospitals in 10 days time, we cannot help but feel that our worlds have been turned upside down. Dr Stephen Porges’s Polyvagal Theory explains how it is a biological necessity for us to connect with others and yet, we are also faced with a very clear and serious reality that we must only do so at a distance, if we are to slow the spread of this disease. Being faced with this surreal need to remain physically distant from each other, is understandably leading many of us to feel lost and unsafe.

These challenging times, require us to find other ways of reaching out, to socially connect, but at a distance.  Thankfully we have modern technology to assist us in this. We should not underestimate how powerful video calling is going to be during this time; how reassuring it is to hear the sound of our loved ones voices and to experience the warmth of a compassionate smile.

We are fortunate in the Autistic community to have already established some wonderful online spaces to hang out and it has been great to see these expand and grow over the last few weeks. I have also felt incredibly moved by the number of people sharing their talents online for others to benefit from. People have been playing soothing music, sharing about wildlife, nature and the hopeful early signs of spring, providing online exercise and yoga classes, and we are starting to see a greater emergence of teletherapy.

As human beings, we are incredibly resourceful and we will find ways through this, but we will do so more successfully by maintaining our supportive connections through the technological means that are accessible to us. This time will pass, but whilst we are in it, there are also a number of opportunities before us. One of these and one that I have been thinking about a lot, relates to the understanding around how for many neurodivergent people, this powerful neuroception of threat that we are all currently feeling, is a state that has been and still is, our lifelong experience.

Even without the coronovirus, our demanding world fails to accommodate neurodivergent needs. Many neurodivergent people remain unsupported and find themselves feeling overwhelmed by a neuroception of threat every day. The threat levels that everyone is feeling right now, can often be the norm for this population, for whom the world is a bombarding place filled with overwhelming sensory, social and demand stimuli. This current crisis is not neurology specific, but it does provide a compassionate and empathic window into the lives of the neurodivergent population. For many neurodivergent individuals, the way you have been feeling these last few days and weeks, is how we feel most of the time.

I also want to add that in the same way that it is not disordered for any of us to be experiencing high levels of anxiety through this pandemic, it is also not disordered for Autistic people to feel high levels of anxiety and overwhelm in a world that is relentlessly unforgiving to neurodivergent nervous systems.  When we understand the source of people’s responses in context, they become understandable.  When we see people’s responses as disorders we identify the problem within the person.  The former makes it possible to explore and make changes and adaptations in the environment that can significantly improve a neurodivergent person’s entire wellbeing.  The latter invalidates the Neurodivergent person’s whole being.

In the weeks that lie ahead, we all have the opportunity of a slower paced life, with more time to reflect and wonder. Maybe one of the outcomes of this time, might include greater insight into difference, in its many forms.

Wouldn’t it be wonderful if some of those reflections also led to more meaningful accommodations being made for our neurodivergent children and adults?

I would love to hear your thoughts and feedback on the themes raised in this blog here or over on our Facebook Page

https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/
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Don’t Tell Me How I Feel!

Statements such as; “I can see that you’re feeling upset / worried / angry” do not land well in our house.

They are quickly returned defensively with “I’m not upset/ worried / angry”.

And whilst interoception challenges / alexithymia are factors we also juggle, what I am referring to here is not about ‘not knowing’, it’s about ‘don’t tell me!’

If instead, we offer an acknowledgement of how tough something is; “I know and understand that x is really difficult, or it’s really hard or upsetting when x happens”, it can feel much more supportive and validating.

I make sense of this in terms of how threatening it can feel to have your inner world commented on. Our feelings are intimate and when they are big feelings, they can make us feel exposed and vulnerable.

Having our feelings named for us, can trigger a neuroception of threat and lead to an understandable defensive response.

When we talk instead about how difficult x or y feels (the external event or stimuli) and name the emotion that stems from experiencing the stimuli, it can feel much safer to receive and actually considerably more validating.

The former example might feel like an accusation or a sense of blaming the self, whereas the latter is much more about acknowledging how the thing outside of oneself; has understandably given rise to some difficult emotions.

Ultimately, when we respect and honour the person’s experience and validate how absolutely challenging an external stimuli is, we establish a much safer and empathic narrative.

We live in a world, supported by diagnostic manuals, that all too often position ‘the problem’ inside of a person. In some ways the experience of being told that you are anxious, or angry or upset can feel akin to this and therefore feel very threatening to hear.

There are many instances where it may be much more helpful (and accurate) to identify and validate the source/origin of a person’s distress. This will more often than not be within their environment or relationships.

Emotional literacy and supporting children to name emotions is so important, but in the context of the Autistic experience, PDA and anxiety, textbook approaches need to be considerably revised.


🙏💛

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Making Sense of PDA


The current view of PDA is that it is an anxiety driven need to remain in control.


Research into PDA is still in its infancy and there are many ongoing questions around PDA. 

One of these has been around whether PDA is in fact anxiety driven.


Anxiety has many and varied presentations, some of which are invisible, many of which are misunderstood. 


We sometimes refer to anxiety as though it’s definition is a universally accepted truth. 


But anxiety can be seen in many forms and the way we understand it, makes a big difference to how insightful and compassionate we are in navigating it.


When we look at anxiety through a Polyvagal lens, it becomes much clearer, and for me most fully applicable to PDA. 

Through a Polyvagal lens, anxiety is; a highly sensitive neuroception system. 


Highly sensitive neuroception is not faulty neuroception, it is simply part of having a differently shaped nervous system. 

A nervous system that experiences the world deeply and intensely, in a way that can be frequently overwhelming.


Our neuroception powerfully determines which of our 3 neural circuits (or states) are most dominant. 

Each of our 3 states determines the responses we have and the meaning we make of our experiences.


 

Becoming really curious about the neuroscience of PDA, may bring us closer to understanding how a brain wired for protection can present.


Protective responses in the form of the Five Fs, was set out in one of my earlier articles here:

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

In this article I explore more about how our nervous system’s are constantly working hard in the background, out of our awareness, determining our autonomic state, governed by our nervous system’s safety and threat detection system (neuroception). 




In the article’s exploration of whether highly sensitive neuroception may be at the heart of PDA, I speak to the importance of building on this formulation, by exploring the nuances of our autonomic nervous system.

The benefits of doing this, include starting a journey of befriending our nervous systems, and beginning to experience just how interconnected our nervous systems are with other nervous systems around us.

Exploring this in terms of how our nervous system communicates with our child’s, can be and for us has been, deeply important. 

PDA, as a ‘profile of Autism’, or as a distinct part of one’s Autistic experience for some, can be thought of as part of a complex and multifaceted response system, that needs to be understood in context.

For me, and in our family’s experience, PDA is a quest for safety in a world (and systems) that are both traumatised and traumatising.

Having a PDA Autistic response system, may be thought about as a set of distinct responses that arise when experiencing a neuroception of threat, or the absence of sufficient cues of safety.

Understanding the Autonomic Nervous system (ANS) is so important in helping us to support Autistic children, and ourselves as adults, to feel safer in a demanding world.

Effective support may also be deepened by understanding the Autistic experience from multiple Autistic perspectives.


I highly recommend reading the following two articles as part of reflecting on our understanding of what it is to be Autistic.

What is Autism?


And

What Is Autism?

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💛

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No First Day At School Picture

Indirectly, society, some of my friends and family, Facebook and my conditioning, are all telling me, that I should be sad today. I should be sad that my son should be starting his first day at school today and that he is not.

I sense the eyes of onlookers. I hear the whispers of concern. I am aware of others values and beliefs.

Many of these values and beliefs were previously shared by me too. Before I needed to re-examine them, that is.

This week I have asked myself whether I feel upset, or envious, as the children pass by our window on their way to school, or by the many photos on my news feed of children in their pristine school uniforms standing by their front doors?

Have I felt upset this week, despite this armour I often feel the need to wear?

My truth is actually somewhat different to this. As I sit here watching my son learning through play with his new, PDA informed, tutor, in our home; I feel relieved, I feel reassured and I feel immense gratitude.

Perhaps you’ll consider this aberrant? Some of you may. But I know there will also be many of you also walking this path, that will absolutely get this.

My feelings are informed by a stark understanding about the extent to which our son’s sensory, social and everyday demands, will not be met, accepted or respected in the school based settings otherwise available.

They are also informed by the knowledge of how unbearably intense a classroom environment would be for him.

I feel thankful that this knowledge is deeply integrated into my understanding of, and my connection with, my son. I know, that by not sending our child off to school today, his beautifully sensitive and attuned, 4 year old nervous system, will not have to endure a painful and overwhelming environment everyday, something he simply could not cope with.

I have observed how immensely damaging structured groups are to the very core of our son’s being. I have been his safe space every time we have returned home and he is exhausted after being bombarded with demands. I am always the one who is there when he can’t hold on any more and his distress tumbles out.

I am also with him everyday as he struggles to manage even very low – demand schedules, let alone the complex environment of school.

I know the irreparable damage that would be caused to his whole wellbeing, if we ignored all of the evidence he has shown us, of which there is so much.

In a week when I am expected to feel some sadness, I predominantly feel immense gratitude. Gratitude that my son has been able to unequivocally communicate to us what he needs. I feel thankful that his needs have also been assessed and reported by some key professionals. I feel thankful that we have a specialist assessment report that recommends a non school based education. I feel thankful that we have been able to tune into the needs of his neurodivegent bodymind.  I also feel immense gratitude for all those who have helped us to gain this understanding of his identity.

I won’t deceive you though. It would be disingenuous and misleading if I was to give the impression that I am so assured in all of this, that I don’t feel vulnerable in our decision. 

Carving out a different path is daunting, challenging and exhausting. I am constantly learning how to lean into my vulnerability, to sit with my emotions and find the courage to trust in the process.  

Most importantly, I am learning everyday how to provide my son with the space he needs to be who he is, and the freedom he needs to learn on his terms.

None of this is easy, I am not good at feeling vulnerable, I need a high level of safety and control too.

I’m sure many of you will relate though, to how our incredibly powerful love for our children, powers us through. Becoming a parent has provided me with a strength that has been the most growthful and positive of my life.

Together, my boy, we can and we will figure this out.

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Can We Just Mute All This White Noise For A Moment?

In the peace and quiet, when I am attuned and connected to you, my child, I am sure, I am confident and I know what you need.

In the peace and quiet, when I am not repeating in my mind all the what if questions I have heard this week, I am clear, I am enough and everything is going to be okay.

In the peace and quiet, when I am not making comparisons to other children, to my own childhood, to my own parents, I can clearly see your needs, your strength and I trust your path.

In the peace and quiet, when I am not been triggered into feeling I am not good enough, strong enough or smart enough, I see you, all that you are and all that your are learning.

In the peace and quiet, when all the white noise around me ceases, I am able to trust that you will learn and grow, exactly as you need to, and at a pace that meets the needs of your individual nervous system.

In the peace and quiet, I can breathe, I can believe and I can facilitate as you lead.

In the peace and quiet I know our plan, this different one that you are showing me, the one I didn’t even know was there.

In the peace and quiet, I give such thanks for you, my spirited, strong and autonomous son.  I openly await and look forward with great curiosity, to all the adventures and growth we have ahead of us.

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Intrinsic Motivation and PDA: A Week Full of Rich Narratives From Autistic PDA Adults

Kristy Forbes – Autism & Neurodiversity Support Specialist and Fan from Roarheart, provide so much insight in their amazing new podcasts @FightandFawn. I value the content of what they are sharing very much.

I wanted to take a moment to highlight one of the points they make about Education. They highlight the importance of providing our children with the space to find their own talents, gifts and strengths; by giving them the freedom to learn in their own way. They identify the central role of intrinsic motivation in children’s learning (and life) journeys and why this is effective, where imposed expectations and extrinsic motivation are not.

When I had finished listening, I reminded myself of the seven factors that can enhance intrinsic motivation. They are challenge, curiosity, control, fantasy, competition, cooperation and recognition. When reflecting on those seven factors in relation to PDA, I was struck by the fact that each word is not only a factor that enhances intrinsic motivation, but also a word that describes factors that are important to many Autistic people with the PDA profile. A transferable list if you will.

When we really start to respect how these factors link in with our children’s different neurology, we become more able to appreciate why we simply cannot impose our own agendas. All of our conditioned ideas about what children “need to be doing” “should be learning” “have to adhere to” get in the way of parenting our children in the way they need to be parented. When we impose our own anxieties about what learning should look like, we unintentionally cause our children distress. It also only serves to decrease their freedom to learn.

None of this is easy, especially because it sets us off on a path that very few others will be travelling around us. It can feel lonely and it may also feel counter-intuitive at times (depending on your own neurology). But for our children’s very unique needs and for the sake of their mental health, understanding these factors is so very helpful.

In the Q&A With Harry Thompson and Mollie Sherwin this week similar themes were also touched on.

Harry and Mollie provided clarity about how, when we push and try to move our children in a direction that we deem most appropriate; feelings of panic and threat are highly likely to set in. This will naturally drive our children to go in any other direction than the one we are signposting. Harry and Mollie talked about the importance of finding shared direction and establishing equal footing.

Harry also suggested that instead of looking at how we can stop behavior that we wish to extinguish, we focus on what is happening when our children are happy. If we become detectives when their anxiety is low and examine how and why the positive experiences occur – we have a much better chance of building on these positives. By focusing on what is working we can ensure that these factors are then prioritized in order to support and empower our children’s well being.

Thank you to Harry, Mollie, Kristen and Fan for so much great information 💛💛

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Highly Sensitive Neuroception May Be At The Heart of PDA

In this article I hope to describe how Dr Stephen Porges’ polyvagal theory has helped us, as parents, to develop greater insight into our son’s experience when he is faced with everyday ‘demands’.  This will provide a context for my hypothesis that:

Highly sensitive neuroception may be at the heart of PDA

PDA is currently categorised as a ‘profile of autism’.  There is significant variance in recognition throughout the UK and in the wording used by different clinicians.  Some clinicians will name ASD with Extreme Demand Avoidance, others refer to Pathological Demand Avoidance – profile of autism, whilst some remain true to Elizabeth Newson’s original wording and retain the word ‘syndrome’ at the end of PDA.  The following links contain clarity in respect of the proposed diagnostic features:

https://pdaguidance.wordpress.com/pda-diagnostic-criteria/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820467/

When we discovered that our son is Autistic, I started researching more widely about ‘autism’.  Being bombarded with the pathology paradigm everywhere we looked was not serving us well.

It became apparent to me very early on though, that understanding the nervous system was likely to be fundamental to understanding our son’s responses to demand stimuli. 

In 2017 a specialist, independent OT also helped us to think about the role of the nervous system in relation to William’s gross motor challenges and sensory modulation difficulties.  Since then, my curiosity has led me to read some really interesting research and to consider this, more specifically, in relation to PDA.

“Demands” in the context of PDA can mean anything from showering, getting dressed, using a pencil, making a choice, to going somewhere or doing something of interest.  We see in William that even the most innocuous of demands, direct and indirect can be challenging.

As apparent as William’s resistance to everyday demands is, it is even more evident that he is triggered into “survival” mode whenever the environmental conditions challenge his highly sensitive nervous system, and whenever our, or other people’s responses to him deviate from being entirely calm and demand free.  All of this is further impacted by his sensory modulation difficulties and auditory hyper-sensitivity.

Prior to being diagnosed as Autistic, at 2 years old, William’s consultant neurologist diagnosed congenital central hypotonia and hypermobility, with some stereotypies.  When the neurologist discussed William’s diagnoses with us he explained that “central” referred to the brain and that in some children like William, their MRIs showed delayed myelination. 

With this in mind, I became increasingly curious about how his nervous system might be involved in his highly sensitive and frequently fearful responses to objectively, non threatening stimuli, such as everyday demands.  These fearful responses also include more predictably challenging stimuli such as; deep laughs, thunder and certain tones of voice.  Dr Porges refers to these as “lower pitch sounds” which the sensitive nervous system is more likely to be biased towards “in order to detect the movements of a predator” (Porges, 2017).

Some of the behavioural responses associated with the PDA profile of Autism, are considered in the context of “challenging behaviour”.  In many settings the child themselves, the parents, or both are blamed. However, what is observable is only a small part of the picture and much needed clarity and understanding can be found in the literature on neuroception.

Neuroception is how our neural circuits distinguish whether situations or people are safe, dangerous, or life threatening.  If our neural circuits perceive a threat; the principal human defence strategies are triggered. (Porges, 2004)


The term neuroception and its history of origin provides a fascinating story that struck me as being directly relevant to PDA.  Stephen Porges, who coined the term neuroception, writes about his own personal experience of it’s powerful impact when his body’s response to an MRI was incompatible with his cognitive desire to experience one.  As a scientist and academic, he was so interested to experience the process of an MRI scan, yet he became unable to do so because his neuroception triggered the flight response.

“I wanted to have the MRI.  I wasn’t scared. It wasn’t dangerous.  But something happened to my body when I entered the MRI. There were certain cues that my nervous system was detecting, and those cues triggered a defensiveness – wanting me to mobilize, to get out of there.” (Porges, 2017)

Neuroception evaluates risk in the environment without awareness. Perception is a conscious and aware process of evaluating or detecting risk. The difference between the two is crucial to understand, as it links directly to the question of intentionality and behavioural control.

“When we encounter challenging behaviours in a child, the first question to ask is: Is the behaviours etiology top down or bottom up? I came to understand the importance of  considering the child’s reflexive responses to perceived threat … as I was fortunate enough to learn about Dr Porges’ work” (Delahooke, M. 2019)

Because neuroception is a neural, rather than cognitive process; when the nervous system detects threats, it does so unconsciously; “triggering the body to engage defensively” (Porges, 2017). This means that when triggered to mobilize (flight or fight) or immobilize (freeze or flop), the body is not choosing to react as it does, rather it is compelled to do so for it’s very survival.  This ‘override’ occurs even if the escaped or avoided stimuli or event, is something that the person wants to do.

Understanding this neural process for the first time was an important light bulb moment for me.  Porges’ theory inadvertently, further explains the “Can’t – Help – Wont” aspect of PDA; a phrase coined by Jane Sherwin (2015).

It explains the neural process which drives a person to avoid or escape threatening stimuli, which in the case of PDA is everyday demands.  Porges explains how even when the desire to do something is present, the ability to do so can be powerfully overthrown by the process of neuroception.  So in the case of an individual with PDA, we can begin to conceptualize how, when the nervous system detects threat and danger within ‘demands’, that a survival response is triggered, facilitating a form of escape or avoidance. This may explain both the neural process and the lack of behavioural control in the “can’t help won’t” explanation, or perhaps more accurately; “can’t help can’t.”

For some with the PDA ‘profile of autism’, perceived danger, or a neuroception of threat, is almost constant in environments where everyday demands are all around, and complex social and sensory information is overwhelming.


Flight, fight and freeze are more widely known defence strategies.  There is a further defence strategy that is less well documented though, known as fawn.  The term fawn was first introduced by Pete Walker. Understanding why the fawn response is triggered and how it presents could help us to understand why some of our children’s needs remain unrecognised and unsupported for detrimental periods of time.

I will explore a brief introduction to the responses we might see showing up:

1. The survival response Flight is triggered when a person responds to a perceived threat with an intense urge to flee.  This flight can be literal; running away, or it can be more subtle and symbolic.  An example of the latter would be when the person suddenly absorbs themselves in an activity that they are passionate about; in order to feel distanced from the perceived threat.

2. The survival response Fight is triggered when a person responds aggressively to a stimuli that is frightening to them.  This survival response overrides the individual’s connection with others and the fight responses are triggered unconsciously and unintentionally. 

Once the nervous system has calmed, “feelings of shame and regret are likely to be profound, regardless of the person’s ability to verbalize these feelings” (Newbold, 2014).

The survival response Freeze is triggered when the person’s fear response to a perceived threat, takes them into a shutdown state.  This can include being unable to respond to those around you, “staring” at the iPad or TV or into space in what looks like a daydream state.  It can also include falling asleep outside of normal routine, something William does when he has been overloaded with sensory, social and everyday demands.  The easily overlooked and misunderstood freeze responses, which are characteristic of a person who is feeling traumatised and overloaded, can render a child’s difficulties invisible, especially in the busy context of school.  

The freeze response can also be understood as the internal process known as dissociation.  Dissociation becomes necessary in order to escape and protect the self from perceived danger.  Freeze is also referred to by clinicians as hypervigilance (being on guard, watchful, alert)… associated with fear  (Bracha, 2004).

4. Fawning (Walker, 2013) is largely unrecognised. This survival response occurs as a result of prolonged high stress situations.  When the fawn response is triggered, we may observe an uncharacteristic mode of people pleasing, or deferring to the needs and wishes of others, whilst surrendering one’s own.  Fawn is a survival response that can be triggered when a person feels at risk from the people or environment they are in.  (Bal, 2009)  For example, if I am overwhelmed by something in the environment, or by the people around me my neuroception may trigger the fawn response.  This can be thought of as compliance in order to avoid conflict (Bal, 2009). 

Uncertainty and a lack of being able to predict whether a person or group of people may become angry if we fail to please them, is something we all weigh up.  But for a person who is experiencing a neuroception of danger, aggravated by poorly developed skills in reading facial expressions, “prosody of voice” (Porges, 2017) and the many complex nuances involved in social interactions; the fawn response may be triggered to protect the self from the perceived harm of an unknown response.

5. Flop (collapse) sometimes also referred to as Faint is part of our shutdown response.  This  immobilization is not a chosen response, rather it is a reflexive one, triggered to safeguard us. 

Our survival responses and the very different ways in which they present, mean that those with highly sensitive neuroception or as Porges defines it; “faulty neuroception”, may present very differently in different contexts and with different people. 

I have replaced Porges’ term “faulty” with “highly sensitive” as I believe that this is about a different, rather than faulty neural process.  We can appreciate and be grateful for the neuroscience, without subscribing to a medical model, using terms such as ‘faulty’ or ‘disordered’.  We can replace these with more respectful and accepting references to difference, and still benefit from the theory’s applications.   Adapting the narrative does not take away from understanding the impact of having highly sensitive neuroception.   I feel it is possible and incredibly important to validate the difficulties that arise when we have a different experience of the world, without describing something inside of the person as faulty or disordered.

More on Fawning:
The fawn response is much less likely to be triggered in an environment where the person feels safe; with a person who is well known to them.  If as part of a trusting relationship, kind and gentle responses are the norm, then that person is established as predictable. 

“Our nervous systems like predictable” (Porges, 2017) predictable is safe.  In safe relationships the Fawn response is much less likely to be triggered. In less well known relationships or contexts such as school or hospital, the “Fawn” response may more likely to be triggered to avoid conflict and to maintain feelings of safety until back in the refuge of home.  When a neuroception of threat is detected at home around adults who feel safe; one of our other survival responses are more likely to be triggered. 

In relation to PDA, this may translate as demands being followed for some of the time, for some people, in more difficult to predict contexts.  When the PDAer follows some demands for some people, some of the time, it can be very confusing to others around them.  These changeable responses are actually very adaptive though and do make sense when considered within the context of a neuroception of threat. 

I consider insights into fawning, as sitting supportively alongside the literature on masking.

PDA is complex and presents in nuanced ways, many of which are often confusing to the outsider.  When the autonomic nervous system is triggered as a result of a neuroception of threat, we see “first-line defence strategies” that are social in nature.   These are also being shaped by sympathetic nervous system activation and it is important to consider how this may impact communication and perceived sociability. 

Jane Sherwin describes examples of these responses:

“Ignoring is a familiar first line of defence to avoid immediate compliance.  Or she may simply need more time to process the request to ‘comply’, once she feels that the initial demand has been diluted by time. Switching to a different topic in order to distract from my initial request is also a common strategy, or she may promise ‘when I’ve finished this’, or offer a list of imaginary reasons why not” (Sherwin, 2015).

Whilst less recognisably so, these examples are shaped by “flight” energy.  If this stage of response is not working for the child, their state may shift, becoming more characteristic of “fight”. 

As I see William become more activated, I tune in to my body, to help me respond more calmly.  I seek to provide authentic cues of safety and to embody conditions that support him to return to a neuroception of safety.

When we become polyvagal informed, we can begin to feel into the kinds of conditions those with highly sensitive neuroception need, in order to return to their safe and social state.  Understanding Polyvagal Theory may help to deepen our understanding of PDA, it certainly has for us, for which I am so thankful to Dr Porges. 

Further exciting and pioneering insights can be found by looking at the work of Raelene Dundon, a Clinical Psychologist who looks at PDA through a trauma informed lens.  

“I am not saying that PDA is caused by trauma – I believe the current view that PDA is a profile of behaviour that presents as part of an Autism Spectrum Disorder. However, what I am saying is that the reaction an individual has to a demand is similar to a trauma response.” (Dundon, 2018)

I see in William, in his most extreme responses to demands, resonance of a trauma response.  I understand these responses as protective adaptations, automatic responses arising in survive of survival.  When the body is in a defensive state, when the nervous system is activated, a consistently compassionate, attuned, calm and gentle approach is required to support the person back to safety. 

“When neuroception tells us that an environment is safe and that the people in this environment are trustworthy, our mechanisms of defence are disenabled. We can then behave in ways that encourage social engagement and positive attachment.” (Porges, 2014)

Doing this is never easy, we still frequently struggle.  But what we have found is that as our insight has increased and as we continue to do our own work, our capacity has too. 

Polyvagal Theory and a deeper understanding of neuroception, through a neurodivergent lens, has helped us to consider in more detail; the conditions we need to ensure William has both inside and beyond the home environment.   In particular, the essential and non negotiable conditions he needs in his individualised education plan.

“We need to structure settings to remove sensory cues that trigger a neuroception of danger and life threat. The removal of low frequency sounds would be a good start [as well as] creating “safe zones” that trigger through neuroception a physiological state of safety” (Porges, 2017)

Understanding and applying the principles of Porges’ work to educational and clinical settings, could help offer our children the crucial support and accommodations they need.  There are exciting, empowering and hopeful messages within Porges’ work and it has great utility in terms of understanding the requisite conditions required for PDA individuals to feel safe enough to thrive.

I would love to hear your thoughts and feedback on the themes raised in this blog here, or over on the Facebook Page:

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

You can also find Part 2 to this article here: https://m.facebook.com/story.php?story_fbid=3162061340517553&id=2220639254659771

References

Bal, R. (2019). “Fight Flight Freeze Fawn Responses And The Pitfalls Of Empathy” Resolving Trauma and PTSD.  Retrieved from http://www.rolandbal.com/fight-flight-freeze-fawn/ 

Bracha, S. Williams, A. E. & Bracha, A. S.  (2004).  “Does ‘Fight or Flight’ Need Updating?”  Psychosomatics 45, No. 5

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

Dundon, R.  (2018). “Supporting Children With PDA Using Play and Trauma Informed Practice”.  Retrieved from http://www.raelenedundon.com/2018/11/

Kozlowska, K. Walker, P. & Carrive, M.  (2015).  “Fear and the Defence Cascade: Clinical Implications and Management.” Harv Rev Psychiatry. 23, no. 4, 263–287.

Newbold, Y.  (2014).  The Special Parents Handbook.  Amity Books.

Newson, E. (1990).  “Pathological Demand Avoidance Syndrome: Mapping a New Entity Related to Autism?”  Inaugural lecture, University of Nottingham.

Porges, S. (2004). “Neuroception: A Subconscious System for Detecting Threats and Safety.” ZERO TO THREE 24, no. 5 19-24

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

Sherwin, J. A.  (2015).  Pathological Demand Avoidance Syndrome: My Daughter Is Not Naughty. London: Jessica Kingsley Publishers.

Walker, P.  (2013).  Complex PTSD: From Surviving To Thriving.  CreateSpace Independent Publishing Platform.

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Improving Outcomes PDA Day 15 May 2019

I wrote this short fantasy/reflective piece before setting up on wordpress, so it just sat as an early post on my Facebook page. I decided to tweak it and put it into blog format as my focus piece for PDA Day. It is about what things could look like once provision; committed to Improving Outcomes is made available to our children. It uses this slightly quirky/ historical lens to help bring the changes that are needed into sharp focus:

PDA Day 15 May 2039

The Power of Progress

The powerful lens that history and hindsight provides, allows us to see the full magnitude of historical failures. When we look back and reflect on the shocking conditions in which people have lived or situations where human rights have been abused, it often seems incomprehensible.

We might ask how such treatment of people was ever permissible and why those in power were not held accountable?

When we look back at our Education and Health Care systems for example, we feel appalled at the way in which too many children and adults were neglected or failed. We perhaps even take great comfort from knowing we don’t have to raise our children through such times.

This kind of clarity can be seen throughout history when we reflect on the experiences of many vulnerable groups. One strong example of this relates to Autistic children and adults with a PDA profile.

Whilst this profile of Autism is widely recognised and understood in 2039, 20 years ago this was not the case. PDA was still being discredited altogether, or re formulated as a by-product of poor parenting, attachment difficulties or other similarly uninformed explanations.

Adult PDAers, the PDA Society and other committed professionals and parents, tirelessly fought for the rights of this marginalised group.

These people fought to gain recognition of the strengths and difficulties of individuals for whom the PDA identifier was meaningful, so that they could be appropriately supported, understood and celebrated.

For a long time children identified as PDA were persistently squeezed through, what in most cases were, incompatible environments – simply because the available options were so limited.

Local authorities advised that it was only possible to gain “evidence” about whether or not a child could cope in school was to send them to traditional school settings that had no experience or training in meeting the needs of neurodivergent body-minds.

Repeated and irretrievable damage and trauma was often endured for said “proof” to be gained.

It took an unfathomable number of suspensions, exclusions, burnout, and further psychological distress and trauma before the required systemic changes were made. In some cases children’s unmet needs and distress became so acute that they were inappropriately placed in ATUs.

Before this, the majority of parents felt helpless and disempowered by the system, as their child was failed in mainstream settings.

Some ended up “electively” home educating with limited or no support.

Many fought tirelessly through costly tribunal processes to gain specialist or bespoke provision for their child.

In this incompatible and under resourced system, irretrievable harm to the mental health of these children and their families was caused.

PDA children became PDA adults with complex trauma and sometimes chronic health difficulties.

Parents of children with PDA also experienced a decline in their own emotional well being; due to the pressure and unrelenting stress of fighting for their child’s basic right to a fair and equal Education (a fight not exclusive to parents of children with PDA, but shared by many parents of children with unmet SEND.)

PDA was not only unrecognised within crucial services though, it was also relatively unheard of within the general population. Understanding of the distinct set of needs and support needed, was very poor.

This meant that all too often these Autistic children were perceived as “naughty” and their parents as lacking discipline.

Thankfully, after years of advocacy, greater understanding of these distinct neurodivergent needs, led to a shift in services.

Now Local authorities meet their statutory duty to meet the needs of this group of children.

Bespoke plans are comprehensively made for each child based on their individual strengths and difficulties.

And whilst limited funding will always be a challenge for services, at least we now live in a time where there is equal recognition, radical acceptance and respect for diverse needs.

This progress has allowed all children to learn and develop in environments that naturally allow them to flourish and thrive.

With this change we have also seen an exciting shift in the focus of our research into PDA, with an increased interest in how the PDAers differently shaped nervous systems, make them such incredible leaders, entrepreneurs, and agents of change and progress.

PDA in 2039 presents us with many new and exciting prospects.

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