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. 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 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 many meals and pureed them, but he continued to refuse. 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 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 extreme responses to food and there are few 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 any mixed textures are off limits. Any food that looks different from his safe foods cause him great anxiety. His safe foods also 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. William’s process of eating is also very specific and ritualistic.
I have spent countless hours feeling that this must be my fault, that I have failed in some way. 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. 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 did start, 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 has improved. This is due to 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 William’s original sensory diet as he has grown and developed. We have tried out other sensory activities to find the ones that work best for him. We discovered that having a wider range of activities; a toolkit of ideas was essential with William. Being able to offer William choice, creativity and flexibility is the difference between success and a strong “No, I’m not doing it!”.
Attending sensory processing training, delivered by the same specialist OT, has really helped us to develop this toolkit. Feeling empowered enough to implement a sensory diet at home with confidence is so important. I have needed to keep reading and researching to gain more confidence. The wealth of research information available from America as well as the UK is so helpful to access. Fortunately there is so much that is available online. I plan to write a future blog where I will share examples of the sensory integration activities we use and link to many of the resources we have found helpful.
It started to become incressingly 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 William’s 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 another really helpful learning curve of reading and researching; about ARFID.
You may have seen in the press recently, articles describing the link between Autism and Anorexia:
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, 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 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 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 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.
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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: