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, flapping, shaking, tapping, pacing 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 something that makes the Autistic body and nervous system deeply insightful, connected to it’s neurobiological needs and to it’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 Autistic 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.

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 and a really welcoming community over on our Facebook Page

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

I know that you see me

I know that you love me

But I’m scared of this room

This process

All these questions.

These lists and benchmarks

They mean nothing to me.

What do they mean to you?

Will we 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?

Or, will you take my hand and take me home

Knowing more, but not seeing less?

Please don’t stop seeing me

Don’t change your perception

And 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

And a culture to which I belong.

Please don’t respond with sadness

At knowing who I am.

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

Please see the medical terms for what they are

And leave them at the door.

Let us spend our time

Understanding my essence

Understanding my needs

Understanding what supports me to thrive.

For all that you saw before

Is still right here beside you

Loving you and believing you

Every word and description you use.

Please celebrate me

Celebrate Neurodiversity

And 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 of the things I’m meant to be.

💛

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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 to develop;

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 glitches, but my son and his friend are very much in the driving seat. (We do put in place online safety measures to prevent connections with unknown people and we all sign up to peaceful mode).

Minecraft, as a shared passion and interest, really strengthens William’s connection and interactions 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 communication has taken place. It has facilitated so much co-operative play and many generous and thoughtful interactions.

Given that screen time often gets particularly 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 trust the process of this form of self directed learning online.

💛

The Facebook Page supporting this blog is : https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

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/

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 very personal and when they are big feelings, they can make us feel very vulnerable. Having our feelings named, can therefore trigger a neuroception of threat and naturally lead to a 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 an external stimuli is absolutely challenging, we establish a much safer and empathic narrative.

We live in a world, supported by diagnostic manuals, that all too often positions ‘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, be 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 and 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 Autism, PDA and anxiety, textbook approaches need considerably more thought and consideration.

🙏💛

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The current view of PDA; as an anxiety driven need to remain in control, certainly echoes in our family.  

The pursuit of more knowledge throughout this journey has been part of my own need to feel more in control.  This has driven me to explore some of the many questions around PDA.  One of these questions is around the anxiety driven aspect. 

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 the most fully applicable to PDA. 

Through a Polyvagal lens, anxiety is; an overactive neuroception system. 

Overactive or highly sensitive neuroception is not faulty cognition, it is a filter through which information is sent from the body to the brain.  It powerfully determines which autonomic pathway is activated and this determines the response that is generated.  When we talk about differently wired brains and start to become really curious about the neuroscience of PDA, we come face to face with how a brain wired for protection can present.

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

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

This article is just the tip of the iceberg though.  In it, I explored how the nervous system is constantly working hard in the background, out of our awareness, determining our autonomic state and how this is governed by what Stephen Porges refers to as Neuroception; our nervous system’s threat detection system.  I hypothesised that highly sensitive Neuroception may be at the heart of PDA, which I absolutely believe it to be.  The narrative only covers the very early stages of this area of enquiry however, and needs to be quite considerably expanded in order to present all of the layers required for a neurobiological formulation of PDA.

To build such a formulation, we need to explore and understand the autonomic nervous system in greater depth and the way it relates to Autism and PDA.  One of the key benefits of doing this, is that it allows us to start to build a respectful friendship with our own autonomic nervous system.  This then crucially allows us to see, feel and experience the relationship between our own nervous system and another’s.  

Understanding how our own nervous system communicates with our child’s, can be and for us has been, transformational.  I am working away on writing about just this, something that is a much more detailed piece of work, and I am really excited to be able to share this with you in the near future.

As this progresses, I will keep updating my Facebook page with small quotes that will be part of this piece of work as well as continuing to share others work with you. 💛

In mainstream society our personal freedom, autonomy and agency is threatened every day, many times a day. This happens even more frequently for children.  For those with an anxiety driven need for control, some of these ‘threats’ are packaged in the form of everyday demands.

Demands is a very broad term that needs to be unpacked.

The PDA Autistic response to demands is akin to a person’s survival response to fear and places them firmly in a neuroception of threat.

Understanding the Autonomic Nervous system (ANS) is so important in helping us to care for, parent and educate our children more effectively.

The information that is sent from our body to our brains is affected by sensory processing differences;  interoception and exteroception challenges.  Exploring and understanding these is an essential part of understanding PDA.

There is so much more to PDA though, many characteristics that remain overshadowed by the PDAers pervasive avoidance of everyday demands.  These include:

A PDAers ability to hyper focus, to become a master of their interests, to role play, to find their own ways of regulating as they develop and mature, to negotiate, influence, lead, inspire, motivate others, be creative, are but a few of the many wonderful aspects of the PDA Autistic identity.

The key to parenting a child with PDA is to seek change in ourselves, as parents. This includes understanding our own nervous system and better regulating it first.

For our PDA Autistic children to feel safe, it is our responsibility to stop expecting the child to change and start parenting, caring and educating differently. #ParadigmShift

💛

Indirectly, society, 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 really examine them, that is.

This week I have asked myself whether I feel upset or envious as I see 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 will I’m sure. But I know there will also be many of you that follow my page who will absolutely get this.

My feelings are informed by a stark understanding about the extent to which our son’s daily battleground of sensory, social and everyday demands, affects him. It is very much informed by the knowledge of how much more unbearably intense all of this would be for him; in a classroom environment. 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, our highly sensitive 4 year old 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 my son’s mental health, 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 most 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 on 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 really hear our son and reflect on the journey that we have already been on as a family. 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 incredibly misleading if I was to give the impression that I am so assured in all of this, that I don’t feel incredibly vulnerable with this, every single day. Calving out a different path is daunting, challenging and exhausting. I am constantly trying to learn to lean into the vulnerability, to have the courage to trust the process and most importantly; to provide my son with the space he needs to be who he is, and the freedom to learn on his terms.

None of this is easy, I am not good with feeling vulnerable, I need a high level of safety and control too. But many of you will relate to how there is an incredibly powerful force involved in becoming a Parent. For me, this force has actually been the most growthful and positive of my life.

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

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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 see the path, I can see your strength and I trust your direction.

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 the pace that meets your needs.

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 boy, my spirited, strong and autonomous son and I am open to all the adventures, growth and new ground we have ahead of us.

If you like this page, you may want to visit the accompanying Facebook too:

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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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