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To Whom It May Concern

This is a letter written to help a dance teacher understand William’s needs before his first lesson. I’ve kept it as a starting point for other letters. I adjust the content each time, including or excluding information; on a need to know basis, depending on the recipient and setting. I always keep William’s well being at the forefront of my mind when deciding what information to include.

The aim of this letter was to help the dance teacher understand why William might appear not to be listening, may not be able to follow many of the instructions, why he might need to do his own thing (such as run round in circles when anxious) and why demands are so difficult for him to cope with. I know many people look at me like I’m an odd parent (and worse I’m sure) when I talk about using non directive language and reducing demands, so I keep trying to think of different ways to reach people; to help them understand Pathological Demand Avoidance. I wondered if writing the letter “from William” might make a difference.

I’m pleased to say that this letter did help, in that it prevented the dance teacher from responding to William as a perceived “naughty boy” who was behaving inappropriately. She was able to accommodate his needs and allow him the space to express and enjoy himself. I also stayed throughout the session and intervened each time it was needed. Of course this isn’t always possible, but in my experience our presence can make a big difference to how others respond.

The letter might have transferable content, especially if you have a child who masks too.

Dear Teacher, / Friend/ Family Member or Club Leader…

“This Is Me” … I hope you can understand!

My name is William and I am 4 years old.

I love music and I love the song “This is me” from The Greatest Showman. I love expressing myself to music, especially by running round and round in circles.

Mommy has been talking to me about coming to your dance class. This is something I’d really like to do, but I feel very anxious about it. I feel anxious about lots of things, a lot of the time.

I am Autistic and I find it extremely difficult to follow everyday demands. This is known as PDA.

I’m nervous about not being able to copy the dance moves. I’m often unsure where my body is in space, because I have a sensory processing difficulties. This means that at times, I am unable to process sensory information well enough for function. I also have hypotonia and hypermobility which still effects my mobility.

There are lots of situations where PDA really gets in my way! It might not always appear like this; but I really do not choose to react in some of the ways that I do. Having PDA means that I find it incredibly difficult when people tell me what to do. My brain hears “demands” and “instructions” and interprets these as something I need to avoid at all costs. In my brain, “demands” trigger feelings of panic and fear. Sometimes this leads me to run off, refuse, shout, become distressed or to hold it all together and “mask” until I feel safe again.

I can behave differently to a lot of other children, and even though I’m only 4, I am already aware of this. I don’t want to stand out or look different as this makes me feel scared. I don’t want to look scared, as this makes me feel vulnerable. In order to feel less vulnerable, I try to watch how other people behave, and I try to copy them. Sometimes this works and sometimes it doesn’t. People call this process “masking”. To me, it really just means that when I am in unsafe territory, I “hold it all together”; my fears, my stimming and my outbursts of emotion, so that others don’t notice my struggles. My only safe territory is at home by the way, when it is just me, Mommy and Daddy.

Masking is incredibly exhausting!

When I’m back home, on my own with Mommy and Daddy, I feel safe again, so I don’t have to keep masking. This always feels like such an incredible relief. But this is also when I have to let out all of the pressure that has built up inside me (if I’ve managed to hold onto it that is and there are times when this isn’t possible). In situations where there have been a number of demands placed upon me, and there nearly always are because demands are everywhere, I become a bit like a coke bottle that has been shaken up. This means that when I get home, it only takes a tiny last jolt and the top comes off and the bottle spills over, or explodes!

If I explode it is because everything has become out of my control. This is when my body’s FIGHT/FLIGHT/FREEZE response kicks in. This is a survival response we all have, but in children with PDA this response is triggered a lot more frequently, especially when they are not in a PDA friendly environment, which unless PDA is fully understood and accommodated, is almost EVERYWHERE. Lately I have had a lot of FIGHT responses. And I HATE it!

After I have been in the survival mode of FIGHT, I feel really sad and I start thinking that I am a bad person. Mommy and Daddy tell me I’m not and they comfort and reassure me. I have heard Mommy explain that when I react with FIGHT, it is best understood as a panic attack. Mommy was able to understand this more fully after she read the wonderful work of Yvonne Newbold and “The SEND VCB Project”. Yvonne offers incredibly insightful information, delivers training workshops and runs a Facebook support group called “Breaking the Silence on SEND VCB”.

It makes me feel better when Mommy and Daddy try to understand. One day, when I’m old enough, they will explain more of this to me. They will tell me that I am Autistic and that I have PDA. This will help me to understand that my brain is wired a little bit differently and to know more about why I have lots of really amazing strengths, as well as some of these difficulties.

But this is not all gloomy, at least it doesn’t have to be. You see, when people around me are able to follow PDA strategies, it really helps! When my environment is right, some of my anxiety subsides. When I don’t have to be on such “high alert”; I can find sufficient calm to listen, to learn and to feel happiness. I am able to show more of the many wonderful parts of me; how loving, kind, creative, smart and funny I am. I have lots of interests that I love to talk about and one special interest that I would love to tell you ALL about. (I might need another whole blog for this though!)

Mommy has attached a separate document explaining what PDA is and what PDA strategies are. She has included some links to some really clever folk’s work that explains how you can support me and children like me. I really hope you can read them.

Most of all, I really hope this letter helps you to be able to see me and that it makes it possible for me to be able to have the same chance as other children; to learn from you.

Love from,

William 💛

If you enjoyed reading this article, you may want to follow on Facebook too:

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

https://www.pdasociety.org.uk/resources/awareness-matters-booklet

https://www.pdasociety.org.uk/resources/education-resources

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The Way We Talk About PDA Matters

When I read about the core features of PDA, I am able to see lots of examples of each in William. But when I think about how some of these features are described, I do wonder whether we could do so in more positive ways. One (of many) examples of this, for me, is the idea that PDAers withdraw into fantasy. I’m going to reflect on this feature in children.

The National Autistic Society describe how for some children with PDA; avoidance strategies include:

“Distracting the person making the demand, acknowledging the demand but excusing themselves, procrastination and negotiation, physically incapacitating themselves, and Withdrawing into fantasy.”

The word “withdrawing” suggests that this is problematic in some way, a “symptom” of PDA even. However, there are aspects of the way individuals with PDA use fantasy that could be seen as incredibly functional and protective. If a child feels afraid or threatened by a request / demand and their nervous system is telling them to avoid or escape it, using some form of fantasy or “story” to help them, is actually a pretty smart idea. It is a much more adaptive way of escaping a perceived threat than an aggressive strategy, for example.

But if we go one step further than this and consider how the use of fantasy is a critical part of any child’s developmental journey, we can formulate the use of fantasy as a strength. John Holt viewed fantasy as a positive and incredibly important part of children’s learning. Interestingly he more specifically said that:

“Children use fantasy not to get out of, but to get into, the real world”

He argued that because children just want to do what the adults around them do; read, use tools, make decisions and to ultimately have control over their lives, they will use fantasy to “pretend” they have the power that they crave. Holt also explains that using fantasy is something that is a fundamental and growfuthful part of how children LEARN. If children with PDA are spending extended periods of time in fantasy, Holt would argue that they are spending extended periods of time learning.

So perhaps the PDA child should not be described as withdrawing into fantasy in a way that is problematic, but rather as simply being in need of more fantasy play at times when they feel most powerless. It also strikes me that fantasy play is a really important tool for children with PDA and I can absolutely see why they would want to and need to cling onto it.

Furthermore, when a child with PDA is engaged in fantasy, it is also a really wonderful opportunity for us to meet them where they are and to genuinely be alongside them whilst they explore their emotions. If they are happy for us to do this (or to give us the script they want us to follow or the character they want us to be) these are really critical moments for us to embrace; without agenda or direction, but rather with lots of unconditional love and support. 💛

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Changing The Narrative About Autism and PDA

The focus of my blog and page is to join hands with those who, like me, want much more understanding and acceptance of Autistic neurology in mainstream narratives.

My hope is that by bringing together current literature, articles, blogs and information that reflect the diversity and breadth within the Autistic population; that we may challenge the many stereotypes that exist about Autism, as well as challenge our own misconceptions and understanding.

The aim is to provide a page that is rich with many and varied narratives about Autism, as well as to shine particular light on the lesser known profile of Autism; PDA (Pathological Demand Avoidance).

My main drive in creating this page is as a Neuodivergent Mother, to a wonderful boy who is inspiring, funny, chatty, strong, beautiful, determined, resourceful, creative and Autistic with a PDA profile; a subtype of Autism that is particularly misunderstood.

As a family our experience of negotiating the complexities of the healthcare system through assessment and diagnosis and the EHCP and SEND system feels challenging, as does our experience of day to day conversations about Autism.

It is my hope that this page will add to the discourse about Autistic identity and PDA in a way that is positive and supportive. I want my son to inherit a world that has a deeper understanding of Autistic experiences, without being so saturated by inaccuarate and unhelpful stereotypes about Autism.

Much is being done to initiate acceptance around Autism and PDA by organisations such as the PDA Society and individual charities, writers, bloggers and researchers, particularly those who are Autistic themselves. But the task is huge. Historical narratives and medical narratives about Autism still largely dominate in a way that is incredibly unhelpful.

When my son was being assessed, I felt bombarded by medical descriptions such as “disorder”, needing “treatment” and being “impaired”. For me these descriptions did not describe my son and I experienced them as offensive, hurtful and triggering.

I started to actively seek different language, less medical narratives and more embracing and accepting ones. I wanted to be able to connect with an understanding of Autism that felt more authentically descriptive of our boy’s amazing strengths as well as his challenges. I want others to accept that being Autistic is an identity, one that shapes the way a person experiences the world, communicates, thinks, feels, moves and learns.

Narratives are powerful because language is emotive, and the words we use, have such a deep impact.

My son’s beauty and the way he shines can never be represented by terms such as disorder, developmental disability or neurological condition.

And neither can your Autistic son’s beauty, or your daughter’s, grandson’s, granddaughter’s, niece’s or nephew’s.

Every Autistic person deserves to live in a world that understands, accepts and values Neurodivergent identity. We need to be ready and able to go beyond awareness and actually celebrate every individual’s experience of being. And whilst every individual should be celebrated, their difficulties also need to be understood.

Autism is complex and despite the shared characteristics, every autistic person needs to be supported according to their unique set of strengths and difficulties.

A fundamental shift still needs to happen where there is more widespread understanding of the range of difficulties Autistic people face, including those difficulties that can be largely invisible.

I feel I have a responsibility to actively join hands with those already striving to bring about change. It would be amazing to hear more mainstream conversations about Autism that are truly open, respectful and informed. It feels like its slowly happening, but its early days still.

The process of reading, researching and writing about Autism and PDA has been a really important part of my journey in processing both my son’s and my own Neurodivergent identities and in learning how I can be a better parent.

I passionately believe that by challenging common misconceptions and contributing well versed narratives about Autism and PDA, that change can happen one conversation at a time.

I hope you can join me on this journey and follow on Facebook too:

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

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PDA And ARFID

Avoidant and restrictive eating is hugely emotive. Eating difficulties are not exclusive to the Autistic population, but studies have shown that Autistic children exhibit more food refusal than typically developing children. (Bandini et al, 2010)

During our son’s autism assessment we expressed our concerns around his eating in quite some detail. We received an acknowledgement that William’s eating difficulties and sensory sensitivities are a common feature of Autism. Unfortunately though, there was nothing available in terms of support and guidance. The reality of the limited resources in the NHS, is that unless children are losing weight and becoming poorly, there really isn’t any provision for avoidant and restrictive food intake.

William’s eating is and has always been highly sensitive and restrictive. Despite this, his growth and weight are fine. 

History

We followed all of the usual advice about healthy eating from birth, including baby led weaning, but our boy’s sensory sensitivities and struggle to move from purees to more textured food was very clear.

We persisted, gained medical advice, read lots, but he continued to dislike the feel of many foods on his hands and his mouth. He struggled to touch anything wet or slimey and had a clear preference for a narrow range of flavours and smooth, non mixed textures. Of course we expected him to spit out or refuse new foods whilst weaning, but his disgust and refusal of a great many foods simply continued.

We kept trying and worrying and trying some more. We made many meals and pureed them, but they continued to be refused.  We offered lots of finger foods and grazing plates but he would only accept a very small number of foods and one particular brand of pureed food and smoothies, which we kept in the cupboards, in bulk. 

The fact that William breastfed well was such a great relief to us, as this allowed him to continue to gain additional calories and nutrition as well as much needed connection, reassurance, love and safety.

We continued to persevere with offering both the rejected foods and other new foods. We put a small bowl of something new, alongside his plate of preferred and safe foods. And we just kept trying. I presented the food on the plate in fun and appealling ways, bought plates with cars on; his great passion at the time.  We baked and cooked together, played with foods creatively, touching, smelling and licking new foods.

The former stages of touching and smelling progressed, whilst the licking and tasting stood still.  William is hypersensitive to the way food feels and tastes in his mouth.


Over time and instinctively, once we were able to tune out much of the advice given from a neurotypical perspective, we realised that it was crucial for William to be able to have his preferred foods.

If we had witheld William’s safe foods and followed a more traditional route, believing he would eat when he was hungry, we would have had a very poorly boy.

William’s relationship with food was not something we could tell him to “do” differently. This struggle was not an intentional or willful one. It was also not similar to other children who might be described as “fussy”.

William still has very strong responses to food now and there is only a short list of foods that he will accept. His short list of safe foods are mainly beige in colour. He gags and recoils at strong food smells, covering his nose and mouth. Certain textures repulse him and any mixed textures are off limits.

Any food that looks different from his safe foods cause him great anxiety.  He is intolerant of uncertainty and he experiences sensory overwhelm when faced with new tastes and textures.

His safe foods all need to be presented in a certain way with different food types never touching. His brand loyalty is ferocious and we dread it when the manufacturers change their packaging or when a product becomes out of stock. Being able to keep a good stock of William’s foods is so important. 

William’s process of eating is also very specific and ritualistic in ways that are individual to him.

I spent so many hours feeling that this must be my fault, that I had failed in some way.  I had my own significant difficulties with food growing up and as an adult, perhaps I had somehow transferred these?

But in reality, despite the propensity many of us have for Maternal guilt, it is really important to know that some things are outside of our control.  These kinds of eating difficulties are not behavioural, they are not a product of a child’s environment or parenting, they are part of a child’s neurology.  William’s nervous system responds to sensory information in a very specific way and respecting and understanding this, is such an important part of our role as parents.

That doesn’t mean that we can’t help however.  William’s private OT assessment in 2017, which led to a diagnosis of sensory modulation disorder and him having what is referred to as a sensory diet, was really helpful in terms of developing our understanding of William’s eating difficulties.  (At this stage I had limited insight into my own sensory needs and sensitivities and so this process  was really important for me as a parent and as a person).

William’s assessment identified his sensory sensitivities and inability to tolerate and organise the complex sensory information that was overwhelming him during meal times. He was given an individually tailored sensory diet to address his sensory sensitivities around food, with a range of sensory integration activities. 

*It is important to add that William’s sensory diet targeted all of his body’s sensory needs, because so many other aspects of sensory processing difficulties, for example difficulties with sitting, posture and knowing where the body is in space (propriocpeiton), can also have a significant impact on eating.

Implementing William’s sensory diet did, very gradually, help improve his readiness to eat.  It has not yet impacted the range of foods William will try, but there is no hurry up button in this process.  Just improving William’s readiness to eat has been a really significant part of this very long journey.

Sensory Activities That Support Eating Readiness.

Readiness to eat requires the body and nervous system to be in the right state too.   Supporting William to gain the right balance of vestibular input (through swinging, rolling, spinning and so on) and increased proprioceptive input (through pushing, pulling, crashing into bean bags, deep pressure and use of a vibration plate) supports his nervous system to eat.

This is about gaining the right balance of ‘activation’ so that he is both alert and calm enough to start his food. 

His body and nervous system need to be in the goldilocks “just right” state to be ready to eat.

As well as getting the balance of activities right, William also needs the rest of his environment to be just right.  His body and nervous system need calm and quiet to feel safe enough to settle to eat. A calm and quiet environment, down regulates William’s nervous system, allowing his neuroception of threat to quieten. 

Understandably this makes it more likely for William to feel ready and able to eat. 

When the nervous system feels under threat, fighting, fleeing or freezing are priorities, eating is not.  This is a neurobiological truth for us all.


We regularly build on William’s original sensory diet.  There are a wide range of sensory integration activity ideas online, that help keep choices new and interesting.  Knowing that novelty can be really engaging for children with PDA, means that choice and new offerings can be really helpful.  Once we understood William’s sensory profile (and this is where I would always recommend an independent sensory assessment) we gained a deeper sense of what his individual body needs. This allowed us to feel much more equipped to support and empower him. 

For us, this was about understanding the sensory input William needs more of and the sensory input he needs less of, in order to function at his best.

Being able to offer William choice, creativity and flexibility is the difference between active curiosity and engagement and a strong “No, I’m not doing it!”.



We also found that attending sensory processing training, delivered by the specialist OT team, really helped us to develop our toolkit.  Feeling empowered enough to implement the sensory diet at home, with confidence, has been so important. 

We have also found that continuing to read and research has given us more confidence.  There is a wealth of research information available online and a range of really helpful books too. The work of Kranowitz and Ayres  were key starting points for us.

THE INTERSECTION BETWEEN AUTISM, PDA, SENSORY PROCESSING DIFFICULTIES AND ARFID


It became increasingly apparent, that addressing the sensory aspects of William’s eating difficulties was only one part of the picture.  We began to realise that William’s PDA, his need for autonomy and freedom, was also playing a role in his relationship with food. 

With this in mind, we tuned in more closely to what William’s interactions around food were communicating.  His behaviour was screaming:

Back off, I really NEED to be in control of this! When I have no control I feel threatened and too anxious to eat!


There was also a clear pattern of decreased food intake whenever we failed to provide the right level of choice and control that our boy needed.


We increased our flexibility, by removing expectations such as the need to eat at the table, or to sit down whilst eating (all demands most of us will have grown up being expected to meet). 

We are relaxed about William wanting to watch his TV or tablet whilst eating; this clearly distracts him from the demand of eating.

We also found that being as relaxed and “unconcerned” about what William was choosing to eat, really helped.  With time, I could see more clearly that William could sense my need for him to eat and how demanding and off putting this was to him.  (I have no idea, with hindsight, how I didn’t know this in the beginning, because I hate being out of control of my own eating.)
 

Providing choices, but not too many is also really effective at times, whilst at others it is more helpful to just leave a plate of safe/preferred foods by William while he watches TV.   When he is already at his demand limit, we will just leave the plate without talking.  At other times we might say something really low key such as “I was making myself some snacks and I’ve done a few for you too.”

We also refocused on improving our use of declarative language at mealtimes, categorically avoiding phrases such as you “must” or “need to” eat.

Using a food divider plate, so that different foods do not touch each other, has also been a practical and helpful strategy.

The many considerations involved around supporting William to eat, took on new meaning for us when William was assessed by a Specialist Educational Psychologist with expertise in PDA.  As a result of this very comprehensive assessment, we learnt that the eating difficulty William has is consistent with:

“Avoidant and Restrictive Food Intake Disorder” (ARFID).

We hadn’t come across ARFID before and it felt incredibly helpful to have a name and framework to refer to.

ARFID was introduced into the fifth edition of the Diagnostic and Statistical Manual (DSM-5) in 2013 and so it is still relatively new. This new information sent us off on another really helpful learning curve of reading and researching.

You may have seen articles describing the link between Autism and Anorexia:

https://www.bbc.co.uk/news/health-47359416.

This link is becoming more widely accepted, but there is much less research about the relationship between Autism and ARFID and none, that I have found, specifially about the relationship between PDA and ARFID.

Since reading more about ARFID, I feel we have a much clearer framework from which to understand William’s eating difficulties and crucially from which to help and support him.

The following book was a fundamental part of being able to gain this insight:

“Food Refusal and Avoidant Eating in Children, including those with Autism Spectrum Conditions: A Practical Guide for Parents and Professionals” https://www.amazon.co.uk/dp/1785923188/ref=cm_sw_r_cp_apa_i_Xn5GCb6ZE6M5G

The book explains the core features of ARFID which in summary are:

Sensory hypersensitivity: Visual, texture, smell, taste and noise.

Neophobia: Rejects foods that look different.

State anxiety at mealtimes: Rigidity, routines, and rituals.

Rigid food categories: Brand loyalty and the importance of packaging.

It also explores strategies that have been shown to work including:

Allowing preferred foods in order to maintain expected growth trajectory, managing appetite, sensory hypersensitivity, rigidity, routines & rituals and crucially managing anxiety.

The book acknowledges how difficult ARFID can be to deal with in relation to PDA and how it requires a distinct and different approach.

The book explains that the majority of children with ARFID maintain their expected growth pattern IF they are allowed their preferred and safe foods. And whilst very often; a child with ARFID may not be underweight, it is incredibly important that recognition is given to the difficulties they have around eating.

Non recognition of ARFID can lead to a dismissive approach where the child is described as “just being fussy”, or having “something they will grow out of”. ARFID is not something a child will easily grow out of without the right support. Gaining the right help and information allows children to be supported appropriately and not denied their preferred foods or “made” to follow the rules, just because everyone else has to.

Following an accepting and validating approach can also help to increase the range of foods a child may be able to try in the short and long term.

This is very much where we are.  Now that we recognise William’s eating difficulties are consistent with ARFID we feel more informed about how to balance the different aspects.

Our plan includes:

Maintaining the regularity and frequency of William’s sensory diet.

Continuing to use a PDA friendly approach.

Providing open invitations to engage in messy play which focuses on the hands.


Offering opportunities to join in with activities that help to stimulate the face and lips, through shared activities where different materials are explored together, such as brushes, rollers and feathers. 

Experimenting with other activities such as blowing through straws and using face paints also offers different, less threatening opportunities to explore different textures by and around the mouth.  

This whole process of reflecting on our relationships with food, has led me to wonder about the intersection between ARFID, Autism, Sensory  processing difficulties and the PDA profile of Autism, where intolerance of uncertainty, anxiety and avoidance all feature highly.

I would love to hear your thoughts and experiences on this topic. It would also be great to hear about any resources or research that specifically relate to PDA and ARFID that you may have come across.

If you enjoyed reading this article, you may want to follow on Facebook too:

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References

Bandini, L. Anderson, S. Curstin, C. “Food Selectivity in Children with Autism Spectrum Disorders and Typically Develop Children”. Journal of Paediatrics. April 1, 2010

Harris, G and Shea, E. Food Refusal and Avoidant Eating in Children. London: Jessica Kingsley Publishers, 2019

Link to a very helpful video by Dr Elizabeth Shea:

https://goo.gl/images/1dmzXT