PDA And ARFID

One of the most worrying things for parents of Autistic children can be eating difficulties. During the autism assessment process we expressed our concerns around William’s eating pattern in quite some detail. We were hoping for some specialist advice and guidance. What we received instead was a blanket statement which went something like:

“Well yes, those kinds of eating difficulties, sensory sensitivities and rigid and repetitive patterns around eating are very much part of Autism.”

Given how individual, varied and complex every presentation of Autism is, these kind of broad brush strokes don’t really help. We were hoping for, and needed more. Unfortunately the reality of the limited resources in the NHS, is that unless children are losing weight and becoming poorly, there really isn’t any service provision.

William’s eating is and has always been, avoidant and restrictive. Despite this his growth and nutrition is fine. 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 both on his hands and his mouth. He struggled to touch anything wet or slimey and had a clear preference for a narrow range of smooth tastes. Of course we expected him to spit out or refuse many foods as a baby whilst he was weaning, but his disgust and refusal of many foods simply continued. We kept trying and worrying and trying some more. We made so many meals and pureed them, but he continued to refuse them. 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 . 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 appealing ways, bought plates with cars on; his special interest, we baked and cooked together, played with foods, touched, smelled and encouraged licking as well as tasting new foods. The former stages of touching and smelling progressed, whilst the licking and tasting stood still.

Utimately we realised how crucial it was for William to be able to have his preferred foods. If we witheld his safe foods and followed a more traditional route of; “eat all your dinner or there will be nothing else”, believing he would eat when he was hungry, we would have had a very poorly boy. His relationship with food was clearly not something we could tell him he must “do” differently, it was not something he was choosing or could help, and it was absolutely not similar to other children who might be described as being “fussy”.

William has extreme responses to food that include; how few foods he will accept (his list of safe foods is very restricted, and mainly beige) gagging or recoiling at strong food smells, certain textures and tastes and any food that looks different from his safe foods. “His foods” need to be presented in a certain way with different food types never touching. His brand loyalty is ferocious and it is a complete disaster for him when manufacturers change the packaging on any of his foods. When he eats he has very specific and ritualistic ways of doing so.

I have spent countless hours feeling that this must have all been my fault, that I had failed in some way. But in reality, despite the propensity us Moms have for Mom guilt, 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. However, that doesn’t mean we can’t help.

William’s private OT assessment in 2017, which led to a diagnosis of sensory modulation disorder and a sensory diet, was a crucial starting point in helping us gain more understanding about his eating difficulties. His 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 a sensory diet to address his sensory sensitivities around food with a range of sensory integration activities.

Implementing William’s sensory diet started, very gradually, to improve his readiness to eat. It has not yet impacted on the range of foods he will try. It is still early days with this and there is a long journey ahead with lots more work to do. But his readiness to eat is improved by him gaining vestibular input (through swinging, rolling, spinning and so on) and increased proprioceptive input (through pushing, pulling, crashing into bean bags, deep pressure and so on) before a meal. This balance of activity helps him to become both alert and calm enough to start his food. Helping his nervous system to be in better balance using his sensory diet is so important. When we get the balance of activities right and we keep the environment really calm and quiet, it helps to reduce his anxiety, and this makes it more likely that he will eat enough of his preferred foods to maintain health .

We have built on the original sensory diet as William has grown and developed, by trying out other sensory activities that have a similar effect. Attending sensory processing training, delivered by the same specialist OT, has really helped us to do this. We have also researched this area further in order to benefit from the wealth of research information available from America as well as the UK. (I will share some specific examples of the sensory integration activities we use in a future post.)

It started to become apparent though, that addressing the sensory aspects of William’s eating difficulties was only one part of the picture. It became clearer to us that the core feature of his PDA; the need for control/ freedom, was also driving his eating difficulty. So PDA was driving with one hand, whilst anxiety and sensory processing difficulties were driving with the other.

With this in mind, we felt we needed further clues about what else might help. We reflected more about the kinds of behaviours we were seeing around food refusal and what these were telling us. The loudest message William was giving about his eating was, back off, I really NEED to be in control of this, because when I have no control I feel too anxious to eat! There was a clear pattern of decreased food intake when we failed to provide the right level of choice and control that our boy needed. So we refocused on improving our use of PDA Strategies at mealtimes.

The PDA strategies we now use to lower anxiety around eating include:

Avoiding phrases such as you “must” or “need” to eat, or I want you to finish eating this.

Being flexible; not insisting on coming to the table to eat, or sitting down or sitting still and allowing him to watch his TV or tablet to distract from the anxiety and demand of eating.

Being as relaxed and “unconcerned” about what he is choosing to eat as possible. As soon as William realises that I would really like him to eat more, or like him to try something new, it becomes a demand and he will immediately refuse it.

Providing choices, but not too many is also much more effective. And then at other times, when he can’t cope with making another choice that day, it is more helpful to just put a plate of his safe/preferred foods in front of him while he watches TV. At these times we either say nothing at all; just leave the plate, or just say something really low key such as; “I’ve made you these incase you’re hungry”.

Using a food divider plate, so that different foods do not touch each other, has also been a very practical and helpful strategy that helps to lower William’s anxiety.

All of these complexities have recently taken on new meaning for us. This has been thanks to a Specialist Educational Psychologist who has expertise in PDA. She carried out the most comprehensive assessment William has had to date. As a result of her assessment, she was able to provide us with much greater insights into a number of areas of William’s presentation. She advised us that his specific kind of eating difficulty is consistent with “Avoidant and Restrictive Food Intake Disorder” (ARFID). We hadn’t come across this before and it felt incredibly helpful to have a name and framework for William’s eating difficulty. 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 yet another really helpful learning curve of reading and researching all about ARFID.

You may have seen in the press recently, 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, about the relationship between PDA and ARFID. Since reading more about ARFID, we 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 PDA can be to deal with in relation to AFRID and how it requires a distinct and different approach to the way in which we might intervene with other profiles of autism; Classic Autism or Aspergers.

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 the recommended strategies 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. We now recognise that Williams eating difficulties are consistent with ARFID and that we need to follow an intervention plan that is able to balance all aspects of William’s ARFID.

The plan includes:

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

Continuing to use the essential PDA friendly strategies.

Gradually increasing the frequency and challenging nature of messy play which focuses on desensitization of the hands.

Building on activities that help to desensitize the face and lips with activities such as using different materials/brushes/rollers to stroke and pat the face and head, blowing through straws, using face paints and so on.

As a result of this process of reading and reflection about Williams specific and complex relationship with food, I have also wondered whether there may be a particularly strong connection between ARFID and the PDA profile of Autism, given that both are very much about control, anxiety and avoidance. This would certainly be an incredibly interesting research project.

I will leave it there for now, except to say:

That I will come back to this topic in future posts.

That I would love to hear your thoughts and experiences on this topic too

And

That I will leave you with this very helpful video by Dr Elizabeth Shea:

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

💛

If you enjoyed reading this article, why not follow on Facebook too:

https://www.facebook.com/changingthenarrativeaboutautism/

15 Comments

  1. 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

  2. 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 💛

    Liked by 1 person

  3. 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

    Liked by 1 person

  4. 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

    Liked by 1 person

  5. 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

    1. 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 1 person

  6. 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

  7. 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

    1. 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

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