Every so often, a news story about the effects of severely restricted eating pops up in the media. They are often written to shock, with little mention of the complexities behind restrictive eating and the many difficulties faced by people living with a very restricted diet and their family members.
It is rare to see ARFID explained, or even mentioned, in these news stories. Yet members of the ARFID community are constantly asking for better recognition of this eating disorder, and crucially, more support pathways.
For this article, I’ve collated some of the most frequently asked questions about ARFID. The answers have been crowdsourced directly from the ARFID community. This is what people with ARFID and parents / carers of people with ARFID want you to know.
You can read more about my lived experience with ARFID here.
What is ARFID?
ARFID stands for Avoidant / Restrictive Food Intake Disorder. Unlike more commonly known eating disorders, ARFID is not characterized by body image, but by an avoidance and extreme dislike of certain types of food and textures, leading to a very restricted diet.
Imagine someone sat you in front of a plate of bugs, and expected you to eat it as if it were a totally normal, enjoyable food. This is how someone with ARFID feels around unsafe foods. It is a fear, an anxiety or a repulsion around eating certain foods or textures.
ARFID is a very newly recognised eating disorder, having only been added to the DSM 5 criteria in 2013. It used to be known as Selective Eating Disorder.
ARFID is not fussy eating
Fussy eating is a normal developmental phase. ARFID is a much more serious disorder that does not go away of its own accord.
Is ARFID a type of anorexia?
No. ARFID involves an avoidance of food, but the avoidance does not involve any distress about body shape, appearance, or fears of fatness. People with ARFID are sometimes misdiagnosed with anorexia, as there is a less wider understanding of ARFID.
There are lots of ways to get nutrients into the diet – smoothies, hidden veg, vitamin supplements – why aren’t ARFID parents trying harder?
Many people with ARFID are not able to swallow vitamin tablets, nor will they tolerate liquid drops. Many ARFID sufferers are ‘super tasters’, having a very keen sense of subtle flavour changes, they will often be able to tell when you’ve added something to their food.
This makes sneaking things into safe foods very difficult to achieve, and can run the risk of total rejection of that food from that point forward. Being sneaky with hidden nutrients can lead to losing carefully built trust.
Trust is very important
Trust between parents / carers and a child with ARFID is absolutely crucial. A person with ARFID needs to feel safe around the people who are their main food providers. I know from years of experience with my son, that surprising him with new food, or frequently attempting to bargain with him to try something different, only increases his stress levels, makes him on edge and far less likely to enter into any conversation about food with me.
Always providing a child with safe foods and never pushing them to try things they aren’t comfortable with isn’t ‘giving in’. It’s actually possibly the most crucial part of caring for someone with ARFID – feeling safe and building trust creates the best baseline for open conversation about feelings around food – your child will feel supported but not pressured if they do decide to try something different to eat.
ARFID has to be the parent’s fault. Unhealthy eating is taught from the parents. Parents instil these attitudes in their children from a young age
If it’s down to nurture rather than nature, why don’t all four of my children have ARFID? There is just no logic in the argument that it is the parents fault or a learned behaviour.
A child can have the typical ‘ideal’ nutritional start to life, and still develop ARFID. My child breastfed into the toddler years, followed baby led weaning, no junk food, processed foods, or chocolate before the age of two. My son with ARFID, along with the rest of his family, has grown up eating fresh home cooked food every day, with plenty of access to new foods. All four children have had the same access to food in the same household, following the same early childhood introduction to foods, and yet 1 out of 4 has ARFID.
Why do parents facilitate eating like this? If your 15 year old only eats Mcdonalds, why not refuse to give them money to go to Mcdonalds?
The advice from the health professionals is to let them eat something no matter what it is. A child willingly eating one thing…something, is better than a child refusing to eat anything. Teenagers have high food energy needs, and if they aren’t eating, they can quickly become underweight, chronically tired, and leads to a whole host of other potential problems – any food is better than no food.
ARFID and Autism
ARFID has common links to other neurodiversities and mental health issues such as Autism, OCD, and Anxiety disorders. But you don’t have to have one to have the other, ARFID can and does exist on its own.
You don’t see fussy eating in the developing world, where children have no choice but to eat what’s available
Unfortunately, food intake disorders like ARFID do happen in the developing world. In the worst outcomes , they fail to thrive, become malnourished, and die.
Why is it so commonly junk food and fast food that are safe foods for people with ARFID?
Processed food almost always looks and tastes the same each time. You know exactly what texture and taste you are getting from a McNugget every time.
Why do the parents not fight harder for treatment for ARFID? Why are they not banging down the door of the GP every day?
ARFID is not as commonly recognised as other eating related disorders. As it is to do with food intake, rather than an avoidance of all food altogether, it can often go under the radar, especially if there are no weight issues. And treatment is definitely far from widely available. Unfortunately, many people fighting for healthcare support with ARFID come up against a brick wall, and are left to figure things out on their own.
“Don’t pander to them, they’ll eat when they are hungry” is the worst advice for someone with ARFID
A person with ARFID will not simply give in and eat what you want them to when hungry. They will not be able to eat, despite hunger.
There is a physical and mental barrier to eating unsafe foods. Forcing someone to eat unsafe foods is traumatic, leads to a loss of trust, and can create further negative associations towards food and can have the opposite effect of the person withdrawing from food altogether.
It’s not our fault
People with ARFID feel guilty and judged. Parents and carers of people with ARFID have run the full gamut of guilt. We know it’s not our fault, but we still feel it. We don’t need other people to tell us.
Unsolicited advice does not help
Parents of children with ARIFD have tried everything they can think of and more to help their child eat a balanced diet. We’ve been round and round in circles only to arrive back at the start again, realising that we can’t control ARFID for our children or make it better.
Your unsolicited suggestions on making food fun and involving your children in the cooking process can be deeply upsetting for us to hear – If only it were that simple. Plus, we don’t appreciate the insinuation that we haven’t tried.
Sensationalist headlines and reporting do not help
“Boy goes blind from only eating chips and chocolate” is an uninformed headline designed to food shame and panic parents. “Boy goes blind from lack of support from healthcare professionals” would be much fairer and more accurate.
Frequently, we see sensationalist articles about “extreme fussy eating” with little or no mention of ARFID, because it doesn’t fit the narrative to include such an obvious explanation – it’s far more compelling to shame families. If the media were more responsible in their reporting of ARFID, it would go some way to help awareness for a disorder that currently has very little support or understanding.
A few years ago, I went on a morning TV show to discuss a news story about a boy who would only eat McDonald’s chicken nuggets. The hosts wanted to focus on the guilt and worry aspect, I wanted to focus on the lack of healthcare support and lack of understanding from the general public. This is a common theme when ARFID crops up in the media. Parents and carers of children with ARFID don’t need your judgment or fascination, they just desperately want more awareness and active support pathways for this eating disorder.
How do I support someone with ARFID?
Don’t make their eating habits a focus of conversation, don’t draw attention to it. Don’t talk about healthy and unhealthy foods. Don’t compare ARFID to fussy eating, in fact, avoid using the term ‘fussy eating’ altogether. Don’t heap guilt on them that they should be eating better.
If you are hosting someone with ARFID, don’t have any expectations that they will eat what you’ve made, and make sure there are always safe foods on the table for them to eat. Do not comment on their food or eating habits.
I think I / my child has ARFID. What resources are there?
There is a charity called ARFID awareness UK.
Join the Facebook support group for parents / carers / people with ARFID
