Categories
Uncategorized

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 detailed our concerns around his eating. We were advised that William’s eating difficulties and sensory sensitivities were a ‘common feature of Autism’ and that there was very little available support or 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 narrow 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 made the move from purees to more textured food really tough for him.


Being sensory defensive to the feel of many foods on his hands and mouth and struggling to touch anything wet or slimey is very real. 

Having clear preferences for very specific flavours and for smooth, non mixed textures, is very important to respect.


I wore myself into an anxious oblivion, blitzing many meals, with a view to increasing my son’s range of foods.  In the early stages I just didn’t have the knowledge around why all of these different experiences were genuinely threatening for my son. 

We offered lots of finger foods, grazing plates and every time, only the same, small number of foods, were accepted. 

A particular brand of smoothies were a firm favourite, and so we kept these in the cupboards, in bulk. 

The fact that William breastfed well was such a great relief to us.  This allowed him to continue to gain additional calories and nutrition as well as lots of comfort, connection and love.


We continued to offer both the safe foods and new foods. We put new foods in a small, seperate bowl, alongside his plate of preferred and safe foods.  This helped in terms of reducing distress.

I presented the food on the plate in fun and appealling ways.  We bought plates with cars on, one of his greatest passions. 

We baked and cooked together.  We played with foods creatively, touching, smelling and licking each one.


The former stages of touching and smelling progressed, whilst the licking and tasting stood still. 

I gradually recognised and later accepted, that our conditioned expectations and my ‘good mom’s judgements, were incredibly unhelpful. 

Our son’s sensory defensiveness to the way food looks, feels, smells and tastes, was not a ‘stage’ to push through.


Gradually and instinctively, once we were able to tune out much of the advice from a neurotypical perspective, we realised that it was crucial for William to be able to have his preferred foods, without the palpable expectations around trying more.

If we had witheld safe foods, following a more traditional approach, believing that ‘all children eat what they’re given when they are 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 of his, should not be exacerbated by pressure from us.  These differences were not intentional or willful, they were neurological.

It was not helpful or accurate to describe William as “fussy”.  And boy did we hear lots of this!


Years later, William’s strong responses to food remain.  He has a short list of foods that he will accept.  His ‘safe foods’ continue to be mainly beige in colour.

He still recoils at strong food smells, covering his nose and mouth.

Certain textures repulse him and mixed textures are off limits.


Any foods that look different from his safe foods cause him great anxiety. 

He is intolerant of uncertainty and experiences sensory overwhelm when faced with new tastes and textures.


His safe foods 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 goes out of stock.

Being able to keep a good supply of William’s foods, is so important. 

William’s process around eating is very specific and individual.


I spent so many hours in the early days, feeling that my son’s relationship with food must be my fault.  That I had failed in some way. 

I had had my own difficulties with food growing up, and as an adult.  I felt that in some way, I must have transferred the eating disorder I had, despite being clinically recovered and healthy.


In reality though, despite the propensity many of us have for Maternal guilt, it is really important to know that some things are outside of our control. 

Eating difficulties that have sensory underpinnings, are not the product of a child’s environment.   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 we can’t help however.  Understanding William’s sensory profile arising from his private OT assessment was an amazing start.  His diagnosis of sensory modulation disorder meant that a sensory diet was recommended for him. 

This 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 explained his sensory sensitivities and his challenges organising the complex sensory information that we encounter when we eat.  

His individually tailored sensory diet addressed both his sensory sensitivities and his need for sensory input in order for his nervous system to be ready to eat.  This involves a range of sensory integration activities. 

*It is important to add that William’s sensory diet targets all of his body’s sensory needs.  This is because there are other aspects of sensory processing difficulties, for example difficulties with sitting, posture and knowing where the body is in space (proprioception), that can also impact eating.

Implementing William’s sensory diet does 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 just the right state.   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 the use of a vibration plate) supports his nervous system to eat.

It is always 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 for food.


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, understanding the sensory input William needs more of and the sensory input he needs less of, in order to function at his best, has been incredibly helpful.

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 helpful.  Further reading has also allowed 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 PDA, William’s 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 William’s interactions around food and what they were communicating.  His adoptive responses was screaming:

Back off, I really NEED to be in control of this! When I am not in control of this, I feel too threatened and 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 for our boy.


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 by being relaxed, accepting and only nurturing in our verbal and non verbal communication around food, that this in itself made a difference.

Being non anxious and authentically accepting that William’s choices are his to make, really helps. 

With time, I could see 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 other times 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 use a food divider plate, so different foods do not touch each other.

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 his eating challenges are 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.

There are none, that I have found, specifially exploring 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.


Important strategies include:

  1. Allowing preferred foods in order to maintain expected growth trajectory.
  2. Respecting Sensory hypersensitivity
  3. Respecting routines & rituals
  4. 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.

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 regarded as having “something they will simply 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.


We recognise William’s eating difficulties now as being consistent with ARFID.

We feel more informed about how to balance the different aspects and our plan includes:


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


Continuing to use a deeply respectful and accepting PDA informed approach.

Providing open invitations to engage in messy play which focuses on the non pressured exploration of food and textures.


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.  


The 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 relates to PDA and ARFID should you come across any.


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

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

References

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


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

Link to a very helpful video by Dr Elizabeth Shea:

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

By Jessica Matthews

Neurodivergent Mother, Independent Researcher, and Writer. Background in Psychology and Counselling with postgraduate training in Clinical Psychology (BSc Hons Psychology and Trained Integrative Counsellor). Passionate about Neurodivergent Identity, Non-neuronormative Narratives and Polyvagal Informed Parenting.

16 replies on “PDA And ARFID”

Thank-you for writing this! I’m hoping that more and more people become aware of PDA and ARFID because otherwise there are a lot of parents who feel they are being wrongly painted as bad parents and children who need support and there just isn’t much (zilch in my area) out there. xx

Liked by 1 person

I found this article very interesting as it relates to my grandson and my husband. I am more than ever convinced that there is a strong hereditary link with PDA and ARFID

Like

This has been so insightful for me, explains a lot and gives me more understanding of my son’s needs.
Thank you for sharing this and making me (& probably many more parents) feel like we’re not alone 💛

Like

Hi. This is so insightful. Thank you for sharing. I’m in a similar boat and boy how stressful is this. Would you mind sharing your OTs details? Id also like my daughter to be thoroughly tested? Thank you

Like

This could be exactly my daughter. Years we have battled the medical system over her eating. Seen dieticians who also scarily held their hands up and said they didn’t know how to help. Like with your son my daughter has always been a healthy weight and height. Eats mainly beige food.. Eats dry plain food. And goes through stages of not even being hungry and hiding food in our garage so we think she is eating. We have learnt over the years to relax with her and let her control her food situation whilst making sure she eats enough each day to survive and not drop weight. We received an autism diagnosis 2 years ago now (she is 11) but still no further forward on help with her eating situation.

X x x x

Like

Thanks for this, I am 43, formally diagnosed with ASD (not officially PDA but very likely) and recognise I have ARFID (and have had for all my life). I can see the negative aspects of this on my health as my safe foods are not great. I due use Huel which is a meal replacement, but find it very difficult to expand my diet because I am not interested in doing so / have the same anxieties about being sick. It makes sense to me now and must have been very hard for my parents.

Liked by 2 people

Stephen,

Im sure your parents worried greatly for you. But it was also incredibly hard for you and still is by the sounds of it.
I wish there was more support available, as the need is so great.
Self understanding is a hugely powerful thing though and it can help us take steps in the direction we want to go.
Sending you warmest wishes and thank you so much for your feedback 💛

Liked by 2 people

My daughter is 24 and was diagnosed with PDA when she was 15. It was so interesting to read this. Lily started gagging on food as soon as she started weaning. She would only eat instant mash and spaghetti hoops for dinner as a toddler. The smell of certain foods and restaurants would make her gag and even be physically sick. Now, at 24 and living on her own, she still struggles with food. She lives on a very high carb diet, no fruit, no veg, and she is extremely overweight.

Liked by 1 person

Wow this is so insightful and it absolutely echoes my son in every way ( we are awaiting a PDA assessment at the end of this month). We recently went to a dietician and the upshot was ‘ well he’s in a healthy weight bracket so…’ yes but my son was born on the 98th percentile and hasn’t followed his weight trajectory as he should. He does everything that your son William does, mostly beige foods ( usually cereal and pancakes) and absolutely no veg or fruit ( unless strawberries) and unless I hide it, but then he usually susses it out as it doesn’t smell or taste ‘right’. For us, our son has a MAJOR issue with smells and the smell or presentation is as bad as the avoidance of mealtimes. We have inadvertently been carrying out PDA strategies for years without realising around mealtimes and basically
He eats what he wants, where he wants, when he wants ( which looks on the outside like bad parenting!)It was fascinating to hear you talk about the link between sensory diet and sensory modulation difficulties and how the sensory diet can calm the system enough to eat more. I hope we also will get some answers soon as to how to help our son, but this blog has offered me reassurance and guidance thank you xx

Like

Thank you so much for your comments. I find writing really helpful and therapeutic, but if my writing is helpful in anyway to others, that feels really important. I’m so glad you found this article reassuring. I wish you all the best with your son’s assessment at the end of the month. Xx

Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s