Many of us know what it’s like having a fussy eater at the table, but few of us will understand the challenges of ARFID.
ARFID – or Avoidant Restrictive Food Intake Disorder – is an eating disorder characterised by someone having an intense aversion to eating.
Whereas other eating disorders, such as anorexia or bulimia, are linked to a dissatisfaction with body shape, size, or weight, ARFID is different. People with ARFID have a lack of interest in eating, sensory sensitivity, and/or a fear of the negative consequences of eating, for example, choking.
ARFID has only recently been added to the DSM-5 (the Diagnostic and Statistical Manual of Mental Illnesses, Fifth Edition), which provides clinicians with guidelines for diagnosing a range of mental health illnesses.
Although it’s more commonly seen in children, people of any age can have ARFID. It can have a significant impact on a person’s physical health and mental wellbeing, so we’re pleased that awareness of the condition is building and treatment options are becoming more readily available.
In this post, Paola Falcoski, Specialist Eating Disorder Dietitian at Altum Health, explains more about ARFID, how it differs from other diagnoses, the overlap with specific conditions, and the treatment options. We also hear from one of our clients, Jayke, who has kindly shared his experience of living with ARFID.
What is ARFID?
ARFID stands for Avoidant Restrictive Food Intake Disorder. People with ARFID do restrict their food intake, but typically for three main reasons:
- Fear of the consequences of eating, for example, choking, vomiting, or gagging.
- Fear or struggling with sensory sensitivity around food, including texture, taste, temperature, or smell.
- A lack of interest in or enjoyment of eating.
ARFID is not a new illness, but it’s now better recognised and diagnosed. Previously, sufferers may have been misdiagnosed, or considered ‘fussy eaters’. However, now that ARFID has been categorised as an eating disorder within the DSM-5, it’s easier (than it used to be) for people to access the help they need from specialist eating disorder therapists.
Diagnosing ARFID
Children around 18-24 months will go through a stage called neophobia, when they might reject new foods. This is a normal developmental stage. However, with ARFID, the child doesn’t move on from this and their food intake becomes increasingly restrictive.
Some clinicians won’t diagnose ARFID in children under five years old because it’s difficult to get a full and clear picture of a child’s eating habits at such a young age. They may not have started nursery or had many opportunities to eat outside of the home to assess whether they are struggling to eat in different environments and/or in front of other people.
Some children may be unable to wean onto solid foods with lumps or different textures so they continue to have milk, formula, or very soft food. However, this does not necessarily mean that the child has ARFID. It could indicate a type of feeding disorder. Similarly, there could be physical reasons why a child is unable to eat. Speech and language therapists and occupational therapists might need to be involved for further assessments.
There is no cut off age for ARFID diagnosis. Jayke, who shares his story with us, below, was in his late twenties before receiving his diagnosis.
What is the criteria for ARFID diagnosis?
ARFID is better diagnosed within a multi-disciplinary team. As outlined by the DSM-5, there is a set of criteria for its diagnosis:
- Unable to maintain a healthy weight or faltering growth
- Nutritional deficiency
- Being dependent on oral or enteral feeds (via a tube), as the person is not able to meet their calorie requirements through food alone
- A negative impact on psycho-social functions, such as eating in a restaurant with friends
The main difference between ARFID and other eating disorders is that it’s not an intentional food restriction. It’s not driven by the desire to change your body shape or size, but rather the fear, sensory aspects, or lack of interest in eating, as outlined above. With this in mind, there is also a set of exclusion criteria for ARFID:
- Concerns about body and shape
- Actively trying to lose weight and change appearance by altering the way you eat
- Consuming a lack of food or any religious reasons for not eating specific foods
- Medical conditions that impact food intake, for example, anxiety, depression, reflux, constipation, or pain
Assessing a person for ARFID
An assessment for ARFID should be done by a multi-disciplinary team including psychologists, dietitians, and psychiatrists to cover a range of factors.
It will include the person’s history from before they were born (i.e. during pregnancy), through weaning, and the early developmental stages. For example, when the person hit key milestones including their speech development and when they started to walk.
The assessment will also look at the impact on a person’s physical and mental health, including elements of home and school life, whether their sleep is affected, and whether they’re highly anxious, for example. Essentially, it aims to understand whether there is more at play than just the food related aspects.
The link between ARFID and other conditions
ARFID affects everyone differently and it’s not unusual for someone with ARFID to have comorbidities (more than one condition at the same time).
Anxiety, autism, ADHD, and OCD are all common comorbidities for someone with ARFID. In these instances, a deeper assessment is required to evaluate whether the behaviour is better explained by the comorbidities or other factors that aren’t related to just eating.
As an example, people with autism will often have sensory sensitivities – not only around food. So while these sensitivities may cause avoidant or restrictive behaviours with certain foods, ARFID may not be the cause.
Solely focusing on the difficulties with eating does not provide a thorough enough assessment to make an effective diagnosis. This is why it’s important to have an ARFID assessment by a multi-disciplinary team that is able to undertake a thorough evaluation.
How is ARFID treated?
Each person experiences ARFID differently. And of course there could be comorbidities to consider too.
At Altum Health, our broad, highly-experienced, multi-disciplinary team is able to deliver strategies to help those struggling with ARFID. They include:
- Food exposure. For example, sitting at the table with their family, seeing different foods, smells, looking, touching, and perhaps tasting the food.
- Food chaining. Linking one similar food to another to build up the range of foods that person is ok to eat. For example, starting with a crisp, the next step could be a vegetable crisp, then a banana chip, before trying a banana.
- Messy play. This is usually for younger children to help them get more interested in the touch of food.
- Involving the family in treatment. To help with regular eating and increasing the volume and/or variety of foods.
- Cognitive behaviour therapy.
Awareness of ARFID is growing. In fact, it’s the focus for Beat’s Eating Disorders Awareness Week this year. However, it can be hard to diagnose and treat without access to and the support of a specialist, multi-disciplinary team. If you suspect you or your child could have ARFID, we can help. Please get in touch to book a free, 20 minute consultation with our team.
Take care,
Paola Falcoski
In their own words, Jayke’s story: Living with ARFID
“As a baby, eating was always an issue. My parents raised it with the health visitor. They said I would grow out of it, but I never did. They were told to leave me with the food and eventually I would eat it, but I wouldn’t. If I was given the option to eat something I didn’t like, I would rather starve.
The ‘picky eater’
Throughout my entire childhood, we knew something was wrong but we didn’t have a name for it. I was simply known as a ‘picky eater’.
I’ve often been told by others how to eat. The trouble is, I know how to eat but I just can’t do it the way I’m expected to. I would see how other people could force themselves to try a food they didn’t like, but I’ve never been able to do this. I just shut down.
I had no idea how to deal with it and felt that I was causing a problem for others. Eating out was always difficult and I felt others were frustrated with me.
A trip to the GP
Unable to make changes to my eating or to eat enough, I was prescribed meal replacement supplements from my GP in my early twenties. I was still yet to receive a diagnosis.
My eating varied slightly over time. Typically, I’d eat just one food for a very long time, e.g. chicken nuggets, but then be so sick of it, I couldn’t eat it again.
I would continue to get increasingly limited by this process as I kept having to change the food I could eat. Over time, I’ve been put off by all meats, which led me to become a vegetarian.
My diet consisted largely of potatoes, bread, and cheese and I struggled with certain textures.
Receiving the ARFID diagnosis
It wasn’t until my late twenties that I received my ARFID diagnosis following a referral from my GP to a dietitian.
I’ve seen many dietitians over the years but they were unsure of ARFID and didn’t feel confident diagnosing it, until one suspected it. They referred me to the specialist eating disorder team at Altum Health. I was able to see a dietician and a therapist under one roof and they confirmed my ARFID diagnosis.
Specialist support
Having the diagnosis and support of the specialist treatment team has made dealing with food less stressful.
Previously, I didn’t think of foods as ‘safe’ foods, but I find it helpful to think of them in this way. I know there are foods that are pretty much always safe and I can work out what to eat based on how I’m feeling and what will help.
I can also now figure out when and how it might be best to try a new food to give me the best chance of liking it and broadening my food variety.
A life with ARFID
I now eat a better variety of foods. They are quite specific, but more flexible. I don’t eat fruit but I do eat more vegetables, often blending them into a sauce to remove the textural issues.
I can now eat out with friends and know there are options I can at the very least attempt. I’m also more confident with cooking and want to try new things.
I still have ups and downs depending on how I feel. When I feel good, food is much easier, but on bad days I will struggle more with foods that are not the ‘safest’ foods. Certain textures can also be more challenging depending on my stress or anxiety on a given day.
I describe it almost as a spectrum of ‘safe’ to ‘unsafe’ with plenty of foods in the middle ground that I can usually manage, but on bad days I rely more on ‘safe’ foods.
Tips for people living with ARFID
Since my ARFID diagnosis, one of things that’s helped me the most is problem-solving, specifically what it is that I don’t like in a particular food/meal. For example, is it the texture, taste, spice levels, etc? This has helped me to be more confident trying foods or trying them in a different way.
Texture is a big thing, so don’t always assume it’s the flavour. Often, if you don’t like something, people will assume it’s the taste. Knowing how you like the texture of something means you can figure out how to have foods and you might prefer them in a different way to how others might have it. For example, I like my pasta really soft, but I know most people disagree and prefer it to be al dente.
Blending up vegetables or having them very finely chopped is a way around the textural issues – sneaking it into sauces helps too!”
This year, Beat’s Eating Disorders Awareness Week focuses on ARFID. From 26th February – 3rd March it will be sharing plenty more information about ARFID to help raise awareness and learn practical approaches related to the condition.
Find out more on the Beat website. If you suspect you or your child could have ARFID, please get in touch with Altum Health to book a free, 20 minute consultation.
