ARFID feels like a common term that you may well be familiar with by now. ARFID refers to an Avoidant Restrictive Food Intake Disorder or a persistent failure to meet nutritional needs. ARFID is not associated with restricting food-related to one’s body image, rather to the fear of the food itself. ARFID is often associated with challenges with the sensory properties of the food, contributing to the fear of foods.
ARFID is a relatively new diagnosis, entered the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013. This diagnosis came after children and adults worldwide were presenting with similar restrictions and fears surrounding trying new foods. Because the diagnosis of ARFID is new, the evidence-based research surrounding the best treatment approach is also limited, however, it is emerging.
An important point to note, the new Paediatric Feeding Disorder (PFD) diagnosis which came out late 2021, created both clarity and confusion around which diagnosis to use. PFD is a feeding challenge that is the result of medical conditions/complications, delayed feeding skills (oral motor, physical challenges, cognitive delay, sensory processing challenges), nutrition deficiencies and/or psychosocial dysfunction. To find out more on PFD refer to my earlier blog on this. Evidence suggests that PFD MUST be ruled out before an ARFID diagnosis should be given. This is because the approach for ARFID follows more of a Cognitive Behavioural Approach addressing the fear first. However, if a child has an underlying medical condition or a feeding skill deficit (such as poor oral motor skills), addressing the fear if not going to improve the feeding challenge. The child may no longer have a fear, but they don’t yet have the skill and ability to eat or their medical condition means food causes pain, the child will not be able to eat. PFD must be addressed first!
ARFID can be a debilitating condition for a lot of families and children, making birthday parties, family dinners, friend sleepovers, and school camps, well a nightmare. It can also make the 5-6 meal and snack times that occur daily a place of stress and fear, rather than of joy and connection. ARFID can place strain on caregivers with societal influence and expectations leaving them feeling defeated and at blame, which is not the case.
Because ARFID is a new diagnosis, the awareness of the condition is limited, and worse the ‘advice’ is particularly lacking and not helpful for children and caregivers of children with ARFID.
I want to bust some myths that might help to raise some awareness of ‘do’s and don’ts’ when talking to someone with ARFID.
- The caregivers will have tried everything! The least helpful thing you can give is unregistered advice. “Have you tried a smoothie”, “Only offer new foods and they will have to eat that”, “They will have to eat it eventually”? This advice, although feels helpful, is not contributing to the caregiver’s stress and worry.
- Never force a child to eat or engage with new food, or food they used to eat.
- In situations where the child is away from their preferred environment (eg: birthday parties), ensure children always have safe food on offer at every meal.
- Don’t keep going on about it, children hear everything so every conversation about their lack of diversity in their diet places added pressure on the child.
- Avoid talking about how yum, tasty or saying ‘I think you would like this food if you tried it. This will contribute to a child’s heightened anxiety and fear of food.
- Support the caregivers, offer time away from the child to listen to the parents’ concerns. Everyone benefits from an outlet source in a safe space.
ARFID is a challenging condition that can be debilitating if we let it. My goal is to create awareness of the condition in a positive light (because everything else can always be so negative). Let’s support our whānau and caregivers, acknowledging what they are going through and offering our support, not our advice. Let’s also work to reduce the stigma on ARFID, by providing safe opportunities and environments for everyone without pressure and expectation.
Rebecca Barnard