ARFID and The Very Real Fear of Food

Last night, Amber Scott appeared on ABC’s documentary show 20/20 and explained her dysfunctional relationship with food to the viewing public.

ARFID (Avoidant Restrictive Food Intake Disorder) is one of the new additions to the DSM, and still has that unique strange affliction stigma attached to it. Even among the medical and psychiatric community, it is poorly understood. Amber did a great job explaining how difficult it is to get past the sensory qualities of food, and illustrates the potential for long term issues with food when children and parents are not properly supported with feeding.

Unfortunately, 20/20 made it a priority to zero in on the one food Amber feels most comfortable with, dismissing a very real fear of unfamiliar food as an “addiction” to French fries. It looks like the selective eating community shall endure that pungent stigma smell for a little while longer.

Amber is very generous with clues. Around 1:10 she mentions a traumatizing childhood experience with peas; at 2:28 she discusses how a limited diet is a living nightmare; at 4:20; she mentions the devastating fear of not being accepted; at 5:08 she describes sensory sensitivity and how food feels in her mouth. From 5:26 through to 8:24, we watch Amber’s agonizing distress over a bowl of plain white rice.

The host says “what happens next is shocking”. She obviously hasn’t been paying attention.

Up until this point, you hear both Amber and a nutritional therapist describe how the selective eater perceives food. It isn’t edible. It looks like bugs. Amber asks a valid question – what is that mechanism that tells us eating french fries or pasta is food and a stick or rocks is not? White rice is, as far as Amber is concerned, the same as a bowl of rocks.

This is a very common perception of food among selective eaters. One very expressive nine year old explains eating as “being in a dungeon with a wall of spikes about to close in.” This same child has also said “it’s like diving into a pool full of sharks. No matter how much I want to swim, I just can’t because of the sharks.”

With that in mind, witnessing Amber’s reaction to a few grains of rice really isn’t all that shocking. It’s actually very understandable. I wouldn’t do as well as she did in a pool full of sharks. The fact that she got a grain of rice into her mouth is nothing short of amazing.

Great-White-Shark-1

Kinda makes you want to jump right in… 10, 15, maybe 20 times, doesn’t it? I want you to reconsider the concept of forced exposure and that children need to taste a food multiple times before they will accept it. Amber tried a single grain of rice and as the video clearly states at 7:28, “Amber declares she won’t be trying a new food any time soon.”¬†There is a valuable lesson to take away from Amber’s experience with rice – the importance of not pressuring (in this case, insisting) a child (or adult) has to taste food they aren’t ready to eat. Her struggle with a few grains of rice is palpable, and her display of panic and fear is very real. Tactics that insist someone (usually the child) eats as another (often the parent) demands only reinforces how ‘dangerous’ new and unfamiliar food can be.

At 8:00 listen to the shame and guilt Amber has endured, despite both her own and her physician’s statements that she is in perfect health.

As Amber so eloquently states at 9:06, “It’s a very old fashioned kind of mentality to tell your children you’ll eat what I made or you’ll starve.” It does sound very peculiar to insist someone jumps into a pool full of sharks or they will be denied dessert, or sent to bed hungry. If we want children to grow up eating as well as we hope they will, wouldn’t it be more useful to make eating a joy instead of an ultimatum?

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14 responses to “ARFID and The Very Real Fear of Food

  1. I asked my wife how she would feel in a foreign country if they put a plate of live grubs, fried crickets, and monkey brains in front of her and told her that it’s really good, they eat it all the time, and that she is just too picky…

    …She understood perfectly

  2. I’ve suffered from ARFID my whole life and my diet consists of chicken and junk food. I’ve been trying to get into rehab but most doctors don’t even take me seriously. I will say I’m happy about seeing this on 20/20 because although mis interpreted in the scenes it’s great it’s coming out of the wood works. I love this post though because all of your points are very valid. This woman’s feeling are real and very relatable to anyone suffering from ARFID. Again, great post.

  3. Wow is all I can say, I won’t be watching 20/20 again anytime soon cause that view was far from 20/20 it was more like 0/20amber. All they cared about was the fries, not the excruciating mental and physical pain she faced because of her eating. Wow.

  4. I have suffered from ARFID my whole life. I am so thankful that this disorder finally has a name and people can understand that it’s not that I’m choosing to not eat a healthy diet, it’s that I physically can’t do it. It is very difficult for me to even try new foods, much less swallow them. I once sat with applesauce in my mouth for over two hours and couldn’t swallow it, I knew there would be consequences if I spit it out and was being watched like a hawk to see if I did spit it out. My mouth was so sore and I wanted to just swallow it to get it over with, but literally couldn’t do it. I was held down and force fed as a small child as well and I feel like that’s where a lot of this stems from. My parents were just doing what they thought was best for me, and then my pediatrician told them to just let me eat what I wanted to stop fighting with me and just make sure that I took a vitamin everyday. This is still a problem in my adult life and I am really hoping to get over this so that I can set a better example for my children. My daughter is a very healthy eater, but my son is entering the picky toddler stage and it just seems a lot worse than it did with my daughter. This is a real eating disorder and should be treated as such.

    • I’m with you. I am almost 40 years old. I live on a diet of fries, pizza, pasta, some fruits, some junk food. My whole life has been being questioned, looked at weird, comments have been made. People don’t get that when I look at most food, I just can’t do it! Trying food, or even having my not normal food in front of me causes such anxiety. Even the few times I have tried something, it’s automatic gag reflex, almost dry heaving. If food doesn’t look right, I can’t eat it. If it doesn’t smell right I can’t eat it. Even for me to touch other food, can’t do it. It has complicated my whole life. I thought I was a freak alone with no one to understand. When I saw this on 20/20 I didn’t know how to feel, this lady Amber, is just like me! I applauded her and give her credit, no one knows what I go through or this finally diagnosed thing I have. My closest friends don’t even know. Anytime food comes up, or a function where everyone else is eating, I either avoid it until everyone is done eating or make up some excuse like “I ate earlier”. I thank Amber for bringing this forward.

  5. Like you, I was also bothered by the way the show continuously mentioned her addiction to french fries, but failed to focus on the real issues that she had with food in general. As I watched her at the table, with the rice in front of her, I thought of my son and his anxiety with food. Although I may not completely understand it, it is real. I also thought the use of “horror style” text as well as the title of the segment, My Strange Affliction, was offensive.

    • I had the exact same reaction!!! My 10 year old daughter was just diagnosed with ARFID two days ago. While I didn’t know the name for it, I’ve known she had an eating disorder for years. I just couldn’t find anyone to help us until now. We did try the starving thing when she was very young…two and half at the advice of a pediatrician. After two days (we weren’t trying to reserve one meal. We made her something she would eat with just a side of something she wouldn’t), she didn’t eat a thing and that’s when my husband and I agreed that this was wrong. If you saw the terror in her eyes, you would immediately understand that she is not just manipulating us. It is a real fear. Watching this woman put a grain of rice in her mouth was like watching my daughter each time over the years we’ve tried to get her to expand her diet. So, so painful.

  6. While Amber’s food phobia may well be real, her mom did her no favors by cooking her French fries for every meal since early childhood. Why eat anything but fries if mommy makes them available at every meal?

    There’s every chance that Amber would have learned to eat other foods had she not spent 20+ years on the French fry diet. Enabled in those early years, when she lacked the ability to get food from anybody but her parents!

    • It’s easy to look back and see how the behaviour was reinforced, but the reality is there wasn’t any support for Amber’s mom, and there is still a lot of poor advice for parents now.

      Had Amber and her mom been properly supported, Amber’s diet might indeed look very different today. Still, it is adult picky eaters like Amber who are the main source of support for many parents who cannot find the help they need.

    • There’s every chance that some friends thought it ‘cool’ she got fries for every meal.. but don’t you think she grew up yearning to eat a slice of cake? Or indulge in a few slices of pizza with the gang after class? To NOT be the weird kid?

      I hated certain foods as a kid ~~ as an adult, I STILL hate certain foods. Did my mother make me sit & watch chili get congealed & then go to bed hungry? Yup. Do I eat chili @ the ripe old age of 48? Nope.

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