ARFID stands for Avoidant Restrictive Food Intake Disorder
Avoidant/Restrictive Food Intake Disorder replaces and extends the DSM-IV diagnosis of feeding disorder of infancy or early childhood. ARFID is an eating or feeding disturbance (e.g., apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following:
1. Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
2. Significant nutritional deficiency.
3. Dependence on enteral feeding or oral nutritional supplements.
4. Marked interference with psychosocial functioning.
In some individuals, food avoidance or restriction may be based on the sensory characteristics or qualities of food, such as extreme sensitivity to appearance, color, smell, texture, temperature, or taste. Such behavior has been described as ‘restrictive eating,’ ‘selective eating,’ ‘choosy eating,’ ‘perseverant eating,’ ‘chronic food refusal,’ and ‘food neophobia’ and may manifest as refusal to eat particular brands of foods or to tolerate the smell of food being eaten by others.
NOTE TO THE NON ARFID
Thanks for visiting. Everyone is welcome.
If you are here to help someone I applaud you and want to hug you. The greatest gift you can give an ARFID sufferer is support, unconditional acceptance and sometimes space when they need it.
If you are here just to learn more, awesome! We want the world to understand and accept this unusual condition.
If you are here with pre-conceived notions please know that what many of us have is a medical condition that causes involuntary sometimes violent reactions to food. We can’t control it. Telling us to just grow up and eat is the same as telling someone with clinical depression to just put on a happy face. It doesn’t work like that. But you are welcome here too and I hope you learn to accept ARFID.
Picky Eater vs ARFID
So how do you know if you’re just picky and not ARFID? There is no easy test. By definition if you have a ‘disturbance in eating that causes…nutritional deficiency’ or ‘significant psycho-social interference’ you have ARFID. Another way to look at it, ARFIDers don’t have control over their eating. Most ARFIDers have involuntary physical and/or emotional reactions to an enormous number of foods. If you simply prefer not to have something because its gross, you’re probably just picky. If you have a limited diet only because you haven’t pushed yourself to try a few more things, you are most likely not ARFID. If you only eat French fries, white bread and milk every day and usually do it in hiding you’re probably ARFID. ARFID goes beyond picky.
How Common is ARFID?
One area where we are starting to see some data is looking at how many people might be affected. Most of us assume we’re the only ones, but the data shows a very different story.
“to date, there is one school-based study that reported that 3.2% of 1,444 Swiss young people between 8- and 13-year-olds self-reported clinical characteristics consistent with ARFID; however, a formal diagnosis was not made .” – Journal of Adolescent Health
Understanding the many faces of ARFID
ARFIDers are a very diverse group. There are young children with feeding issues where the primary concern is adequate nutrition, there are teens who’ve suffered trauma and are suddenly and dramatically eating in a limited way, there are super-tasters who’s reaction to certain foods can be overwhelming, there are children, teens and adults who have uncontrollable physical reactions to certain foods, smells and textures. One might think malnutrition is the consistent factor for those with ARFID. It is not. Of course there are some with genuine nutrition issues. There are also healthy ARFID adults who have quite successfully birthed and raised healthy children. There are ARFIDers who are now grandparents. There are ARFIDers from all over the world.
Sometimes people with ARFID are referred to as extremely picky eaters. I think this is a bit of a misnomer. Picky implies choice. Most with ARFID have no choice. Our bodies can have violent, involuntary reactions to foods. It’s not being “picky”.
What is Common Amongst ARFID Sufferers
We don’t understand the root causes of ARFID although there appears to be a genetic component. It’s hard to predict it or trace it back to something with 100% accuracy. Two people with AFRID very likely developed the condition for different reasons. But there still seem to be some striking similarties. ARFIDers overwhelmingly tend to favor bland white/yellow foods. You don’t see too many ARFIDers who only eat broccoli, kale and oysters. Anecdotally, there are many who are highly creative. ARFID often accompanies other social, psychological or learning disability issues. We also tend to be shy, protective and embarrassed by/about our disorder. According to researchers at UCSD “Up to 72% of individuals diagnosed with ARFID also have a… anxiety disorder.”
ARFID and The Media
Thankfully the designation of ARFID in the DSM-5 is helping AFRID sufferers go from “Hey look at the freaky eater” to being part of a serious discussion about a significant issue. The reporting we see can be a mixed bag of supportive and helpful to very lacking. Unfortunately there are still far too many articles and reports that lump all ARFID sufferers into one basket (usually children) and do little more than suggest hiding more nutritious foods into what we eat. Which by the way doesn’t work too well beyond the age of 5 and can cause trust issues in children and will just anger the rest of us. Some of the articles we see make us question whether any of the quoted experts have ever treated any of us.
But there are some wonderful researchers and doctors who are doing a lot for ARFID sufferers and getting important information to the public. Thank you if you are one of them. You are the reason we have this important acronym.
A special note of thanks to the creators of these blogs. Their outreach has a lot to do with the wonderful ARFID communities and support groups that now exist. It all started with PEA!