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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.

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 my work and say he loves what I’m writing, that it matters to him too and want to join me in this quest. 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 in 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 deeply 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 an understanding, respect for and acceptance that all children, but especially children with a PDA profile of Autism, need autonomy, agency and the freedom to express themselves openly and authentically, is much more likely to be PDA friendly. 

Non threatening and non instructional language is a great start.  It is also crucial that the language we use reflects our authentic meaning.  Carefully choosing words in order “to get” something to happen, will be detected and will nearly always have the opposite effect.

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, paying attention to the phrases that elicit a stress response and making sure that we avoid these wherever possible, is incredibly helpful.

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 whether…
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.

Shall we go and 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.

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/
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A Post Diagnosis Letter (From a child’s perspective)

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.

💛

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

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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 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/

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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 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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