- Avoidance due to a lack of interest in food or eating.
- Avoidance due to the sensory aspects of food (appearance, taste, colour, texture, temperature).
- Avoidance due to a fear of negative reaction/consequences of eating (i.e., fear of choking, vomiting).
Similar to other eating disorders, there is no one single cause of ARFID. Some research has shown that there can be a biological predisposition, or that a food-related trauma can lead to the onset of ARFID. Avoidance, once established, can become longstanding and hard to change. The more a person avoids eating, the scarier it becomes.
What are the Challenges?
Carers shared about the challenges they experience supporting someone with ARFID in this session of Conversations with Carers. Some of the main challenges included:
- Lack of consistency in treatment/care pathways
- Judgement/misunderstanding of ARFID, often labelled as ‘picky eating’
- Dropping safe foods and struggling to find new ones
- Struggling to prepare for meals
- Finding the act of eating distressing/triggering
- Struggling to meet nutritional needs
- Fear of the GP
- Stress and pressure from school & college
- Difficult to try new foods and add variety
What’s Helpful?
A key message from the group was that supporting a loved one with ARFID involves a lot of trial and error. Many carers find having a meal plan (something visual that they can place in the kitchen) takes the pressure off their person when trying to figure out what they feel comfortable eating, especially when hungry. An agreed-upon meal plan also gives the person time to familiarise themselves with upcoming meals, reducing some of their anxiety, and they are less likely to ‘drop’ a safe food from overreliance.
For some carers, the ‘Division of Responsibility’ approach works well. In this framework, the carer is responsible for when and what their person eats, while the person is responsible for deciding which option to eat and how much. This approach can be particularly helpful when mealtimes are stressful, with difficulties introducing and tolerating new foods. Oftentimes, the answer to the question ‘what would you like?’ can feel too overwhelming for a person with ARFID, due to decision paralysis, fatigue, or distress.
In practice, this could involve establishing a regular eating routine (for example, 3 meals, 3 snacks and not going longer than 3 hours without eating each day). Each meal could follow a structured plan, including at least one safe food so the person always has a familiar option. This can help reduce carers’ worry that their person won’t eat, while introducing new foods gradually, without the pressure of having to eat them right away.
When a person’s eating routine and repertoire of safe foods is very rigid, carers recommend trying to make one small change at a time. For example, if your person uses specific cutlery, carers advise trying a small alteration, such as giving your person a slightly larger fork, or providing their meal on a plate rather than in a bowl. It is important to make manageable changes, as even the slightest difference can be distressing for a person. The goal is to help the person tolerate the anxiety of change, so that their comfort and confidence in their ability to be more flexible is strengthened. Another great example is gently varying a familiar food, such as moving from a thin French crêpe to thicker American pancake.
It can be very challenging to introduce new foods for someone with ARFID. Carers highlight the usefulness of food chaining, which is creating chains or connections between what a person already eats with new foods. It can be helpful to think of it like a ladder, where on the first step is the person’s safe food, and at the last step is the new food. Rather than introducing the new food immediately, carers are encouraged to make gradual variations to the safe food, step-by-step, until they reach the end goal of trying the new food. For example, if your person’s safe food is chicken nuggets, start by trying a different brand of chicken nuggets first, then homemade chicken nuggets, then breaded chicken breast, until finally plain chicken breast.
Another great idea from carers is to try to introduce new sensory experiences around food. This can help to desensitise your person to different aspects of food (i.e., their look, feel, smell, taste). For instance, messy play can encourage a person to feel more comfortable around food. Another idea could be including your person in aspects of food preparation and cleaning. For example, asking your person to wash the dishes, so they gain gentle exposure to different foods that other members of the family may be eating.
Finally, there can be a lot of pressure on carers to ensure their person is eating a balanced diet. For many people with ARFID, they may feel more comfortable eating sweet and salty foods. A message from carers is that “all food is good food,” as it is more important that your person eats, before trying to increase the variety of the food their eating.
