“Eating is actually quite a complex process” - dietitians Sarah Fuller and Clare Ellison on ARFID vs 'picky eating'

This Eating Disorders Awareness Week, advanced eating disorder dietitians Sarah Fuller and Clare Ellison are taking over our blog to talk all things ARFID (Avoidant/Restrictive Food Intake Disorder) from a carers’ perspective.

For many carers, we know it can feel confusing to know the difference between ARFID and picky eating. We’ll be asking Sarah and Clare all about how it might present itself, signs to look out for, and what steps you can take to get support.

Let’s get straight to the big question: what is the difference between having ARFID symptoms and just being a picky eater?

Although eating seems simple, it is actually quite a complex process involving many steps and senses and is something we have to learn to do.

We start learning to eat a variety of foods when developmentally ready at around the age of 6 months and continue this as we age. We also all have different personalities, and some of us are more adventurous with new foods than others - which is normal. As a result, picky eating applies to almost all of us. It is what we call a spectrum: from the dislike of a single or a few foods, to someone who dislikes whole food categories (such as not liking fruits/vegetables) but who still meets their nutritional needs.

That’s interesting - avoiding certain foods isn’t necessarily a problem in itself then?

It is actually normal that all children go through a phase of selective eating. This is called the neophobic stage – the fear of trying new foods or refusing foods based on sight (e.g., “it looks different/wrong”). From about the age of two, you might notice a child avoiding foods they had previously accepted, or rejecting foods based on perceived flaws (e.g, spots on a banana skin or a broken biscuit). Most children grow out of this normal stage at around age five though some children can remain in it, which extends into adulthood as extreme fussy eating.

Another factor that determines whether a person has more pronounced fussy eating as opposed to ARFID are the ideas and expectations from those around them about what is ‘normal’. This particularly applies to those who may have more sensory selectiveness due to neurodiversity such as Autism or Attention Deficit Hyperactivity Disorder (ADHD). That’s why it is important that we remember that we all differ in our food experiences and preferences.

To grow and live well, all people need a minimally safe food intake, or one which is ‘good enough’. It’s ok if this intake looks different to others, as long as it is enough for their body and still means they can engage in social activities with a few helpful adjustments. For those with more selective eating than most people, the universal healthy eating messages we’re familiar with are unlikely to be helpful. These types of food messages are more likely to make them, or their carers, feel like they are doing something wrong.

So, how do we determine that someone might have ARFID as opposed to just being on this ‘more picky’ side of the ‘normal’ spectrum of food intake?

Clinically, this more notable food selectivity moves from picky eating into ARFID when someone is experiencing either:

• Nutritional or growth compromise. For example, this means significant nutritional deficiencies, being underweight, not growing in height, or physical development delays to puberty. This can result in some people relying on nutritional supplements to ensure an adequate nutritional intake.
• Significant psychosocial impact. Such as an inability to participate in normal social events, or a significant impact on education or work.

It’s important to mention nutritional deficiencies because these can have a significant negative impact on the way a persons’ body functions (e.g., their healing, hair/nails/teeth, energy levels or sight). We should also remember not all people with ARFID or those with nutritional deficiencies are underweight; you can be of average or above-average weight and have a significant nutritional deficiency.

Are there any particular signs carers can look out for that might indicate someone may have ARFID?

ARFID is a complex condition as there can be many different/overlapping reasons why someone may avoid or restrict their intake. Things you may notice in a loved one who has ARFID include:

• A very limited diet, often fewer than ten foods and struggling to accept new foods. In a child with sensory specificity (meaning restrictive eating based on the sensory properties of food) these are likely to be of a similar texture / appearance / smell / temperature and / or with significant brand specificity (e.g. will only eat one brand of chicken nuggets)
• Struggling to eat sociably or flexibly including eating similar foods in different environments.
• Struggling with the food environment such as with noise levels, smell of other food or other people eating food around them.
• An extreme reaction to the sight/presence/smell of a new food. This is known as a disgust response and can include gagging, retching, extreme anxiety, and running away from the table.
• A sudden and extreme avoidance of many foods/fluids resulting from a choking or vomiting episode (for example)
• Intense and increasing avoidance of foods due to concerns such as contamination

These signs or symptoms might look like a slow and persistent elimination or removal of foods, or a more sudden and rapid avoidance.

As mentioned above, it's also important to note that unlike in most other eating disorders, where the restriction in intake is due to concerns about a person’s weight and shape, those with ARFID limit their food intake for very different reasons.

So, what steps can a carer take if they notice some of these signs, and suspect their loved one may have ARFID?

If you think your loved one has ARFID, there are steps you can take to help and support them without needing a diagnosis and before accessing professional help. Things you can do straight away include:

• Reading support books and helpful websites for ARFID and working through guided self-help material. These can help provide you with knowledge and helpful strategies to approach food and eating change. A list of these is below.
• Go at their pace and reduce the pressure and expectations for change. Try to accept that changes can take a very long time– small changes are still big progress and calm consistency is key.
• Support a helpful meal environment (see link below for further information)
• Practicing self-care. Supporting someone with ARFID can feel overwhelming, restrictive and worrying. It is incredibly important that you practice self-compassion for the challenging situation you are in. Remember that you did not cause this, you are not to blame, you are not failing and that there is hope.

If you are concerned about the health, growth and development of your loved one, please visit your local GP (or health visitor if applicable) for advice and signposting to the appropriate local service(s) in your area. If there is a sudden and rapid restriction in food or fluids (e.g., due to trauma) that has led to sudden deterioration in their physical health please seek help quickly – this may include contacting NHS111 or emergency care services.

Can you suggest any helpful sources of information or further support?

ARFID information pages on the Beat website

ARFID Awareness UK

Guided self-help for sufferers and carers: What are you looking for - Be Body Positive

Recorded webinars for knowledge and guidance: Paediatric ARFID Service - Aneurin Bevan University Health Board (nhs.wales)

Supporting a helpful meal environment: PEACE Pathway - Supporting Eating Difficulties

Food refusal and avoidant eating including those with autism spectrum condition, by Harris and Shea

Helping Your Child with Extreme Picky Eating, by Katja Rowell and Jenny McGlothlin

Beat Hummingbird support group