Avoidant/Restrictive Food Intake Disorder | ARFID & Autism

We've talked before about selective eating/picky eating and autism as well as same food, but we didn't get into the real community that the term "safe food" is used for - those with ARFID or Avoidant/Restrictive Food Intake Disorder.

*Note: This is NOT glorifying or promoting an eating disorder. This is an educational video on the topic.*

References:

[ekovah]

I was abused and mocked so horribly because of my ARFID for as long as I can remember. No adults in my life ever tried to help me and instead they created tons of trauma and shame surrounding food that just added more layers to my ARFID and eventually caused me to slip into anorexia as well. Despite being through many traumatic events, the abuse I received over my ARFID was one of the most damaging and it was so confusing and hurtful to not have any answers. I didn’t know the term ARFID until around 2014, after a lifetime of dealing with it. the general public isnt aware so it’s still very difficult to explain or to get help. Thanks for making this video and raising awareness. My inner child feels recognized and cared for. I hope we can create safer environments and relationships for future generations living with ARFID

[nitchu]

I had a lot of major changes to my sensory issues when my dad passed away last year. I could tell I was developing an eating disorder but it wasn’t based on my body image. I knew it was because I was avoiding the sensation and stimulation of eating. I lost a lot of functionality and I couldn’t cook my own food to stay on budget and maintain my availability to have safe foods. I started to eat just enough to not feel hungry. This should be talked about more. Thank you for the video 🙏

[thefadingmoonlight]

I've had ARFID since I was three. The doctors told my mom to not feed me if I wouldn't eat what she gave me. Days later, I hadn't eaten. It's a lot more than just being a picky eater. I'm really glad it's in the DSM now.

[willowisp]

Having to eat just to survive makes me angry, like I feel betrayed by my own body. Sometimes I'm so hungry it hurts and I cry, but at this point I'm not able to cook anymore. Also my executive function can be so bad I can't bring myself to make food, happens when I'm burned out.
Like I am hungry, i know I'm hungry and I want to eat. But I just don't. Then I'll snack something and the circle begins again. Wish I would not have a body but be a mysterious fog in the woods

[Napukettu]

I suspect I have some form of this, but my fear is not that I'll die, it's that I'll be severely grossed out. I have issues with textures and the consistency of foods. My safe food list is relatively long (thankfully!) so most people don't know I have trouble with eating or just consider me a picky eater. However it does affect my health. Especially if I'm stressed out, the symptoms worsen and I can suddenly stop being able to eat most things and it sucks that it's usually all the healthy stuff in my diet. Bland, high carb things are often safest in terms of taste and texture. They are often also very predictable. I sometimes have a hard time with fruit and veg because they keep tasting unexpectedly different. I was also recently diagnosed with ASD although I'm still a little on the fence about whether or not that diagnosis is correct. I feel like I score high on sensory issues, but have fewer other symptoms. Anyway, I've always felt like a shitty human being for being such a picky eater, even if I feel like it's beyond my control. It's difficult to explain why I don't eat certain things (often other people's cooking). I wish I had a diagnosis I could show to avoid hurting other people's feelings and so I wouldn't have to jump through extra hoops to explain myself to people. It's annoying enough to not be able to eat normally.

[tiiaj]

Super interesting. My sister was anorexic/bulimic.
I’ve found, in the last few years, since I had a really bad arthritis flareup, I’ve had some issues with eating. Because of the pain, overload, actually being unable to feed myself for awhile, and anxiety, I have sometimes been unable to eat and unable to take my oral meds.
And even now, nearly 3 yrs after, I still loose my appetite if I get upset or anxious. Swallowing has become more difficult too.
I know I don’t always register hunger as hunger a lot of times, especially if I’m hyper focused, too.
I doubt my issues are bad enough to consider it to be ARFID though.
So frustrating that there are so many comorbidities with autism, especially when even regular life is harder as it is.

[criticalmaz]

Y'know what I've discovered recently? Peppermint tea. I don't like the taste very much but it really helps with the horrific pain that normally accompanies digestion.

[mrsphatsakk]

For me, it more has to do with the actual drive to eat and then that certain foods (a lot) give me extreme pain when digesting or it gives me instant diarrhea 🤷🏼‍♀️ so I USED to enjoy eating but now it's just a chore that I keep forgetting and reluctant to do. Not to mention that food is expensive AF now and everything at the grocery store is disgusting 🤢

[ashleyk]

Omg thank you so much for this. My sister has struggled her whole life with eating to the point where people have made fun of her for eating disorders/ being a picky eater. We are both in our 20s now and she is still struggling to put on weight and drinking protein shakes every day to keep weight on. We both have our safe foods, also we are both diagnosed with adhd (go figure). Definitely going to do some more research on this.

[alicebeale]

I believe I might have this problem. I have always had food adversions, and little to no interest in eating which I mostly do because my body requires it. But it has become really bad to the point that I can't hold any weight. I went to my GP a few months ago with concerns about having an eating disorder, but because I don't think about food, or have any body image issues they at the time told me that I didn't have an eating disorder, and that my concerns about my weight loss and that i have to force myself to eat was healthy thinking and to keep it up. I have finally gotten through to my GP and getting refured to a dietitian to help me but I had to have a major depressive episode before the realisation clicked.

[dandrive]

I’ve been suffering from ARFID as far as I can remember. A lot of stuff in this video is accurate.
I will say this though for your guess about how people with ARFID don’t have a interest in eating is not entirely correct. At least in my experience. I can feel hunger, and it just doesn’t affect me that much. I think that’s mainly because I’m used to having to wait on finding a safe meal.
The lack of interest in food is more so I’m just incapable of enjoying it to the same level a normal person does. I can have a preference of foods I like based on taste, but the level of enjoyment I get out of food is the same as breathing air or drinking water. It’s just something I have to do to keep living. Another way to put it is that when it comes to eating you have a scale of enjoyment. Most people it’s a 1 to 10. While with people with ARFID it’s more like 1 to 3 or 1 to 5.
As for physical reactions and fear of consequences. I think it’s worth noting that some times it’s just the simple fear of a food tasting bad or actually “hurting” to eat. Which for fellow people trying to recover with ARFID it does get better with the more stuff you try. I honestly believe the pain from trying foods comes from a lack of a tolerance to spice and flavor. As most people with ARFID aren’t used to it at all.

That also brings me to one point that most people don’t mention or realize. Most people with ARFID have a very limited vocabulary when it comes to food. For example I didn’t have a concept of bitter or savory until a year or two ago. This makes it very hard to explain taste of foods which makes it even more anxiety inducing to try foods. For a while it was easier for me to use colors or how it feels in my mouth to describe foods.

So while I’m still trying to get better I do have some good tips that people might want to hear.
• have someone be their to comfort you or keep an eye on you. If possible have them try to explain the taste of the food and go as in-depth as possible. It helps to have an idea going it to reduce the fear.
• Cook your own food. It helps knowing what your putting into it, and it also gives more agency.
• Try food 3 times before you say you don’t like it. It takes a while for the mind to have a preference on how to eat food, and get an idea of the taste. Make sure it’s 3 different occasions and not 3 bites of the same meal. Their are foods how ever that you can tell if you won’t like it for sure. I don’t know how to put it into words other then you’ll know when you try it.
• try to rework your mind to say “Your not sure” instead of “It will be bad.”
•Try foods that are a part of your culture. Personally this is the best starting step. With ARFID the food itself doesn’t matter a good amount of the time. Having something else that connects you to the food makes it all the more tastier.
• Try to describe to a friend or someone to help get an idea of certain taste and textures.
• start with your comfort food group and just naturally expand from their. If you like meat and start trying vegetables it will be a lot hard for you to grasp the taste, and that can feel painful starting out.
• Understand that you won’t like every food, and that’s ok. It’s also ok to not like how people make the food. Not everyone makes it the same way. That’s just human nature theirs nothing wrong with it. You shouldn’t feel bad.

[ketikatz]

I get the "chokey vomit" like sensation if i try to eat something that's more significantly out of my food comfort zone (which reslly isnt much, my ARFID is very textbook and very severe. I have the smallest selection, literally a toddler diet and my toddler eats more stuff than me!!)
And if i do swollow i have a 50/50 chance i might upchuck it 😅 ive even cried from the stress of being asked to eat something new. Also had no problem sleeping on the table when my mom wouldnt let me up due to not eating dinner. I sat there for a good 3 hours and still wouldnt budge so my mom just had us go to bed anf yhen i went and got something else

[lindaweaving]

Thank you, this was very useful. Now I know why my psychologist is pretty convinced I have ARFD.
PS. About the not feeling like eating thing. I find that happens regardless of hunger. I can be very hungry yet still not 'feel' like eating, in which case I can't make myself eat. Same with specific foods at times. You could put my favourite food in front of me, but, even if I'm hungry, if I don't 'feel' like either eating in general, or I don't 'feel' like eating that particular thing at the time, I won't eat it. Even the idea of that provokes serious anxiety. So, nothing to do with hunger, although I do often have a lack of appetite, but that's a different thing. Again, if I'm not hungry I won't eat, and can't be made to.
Oh, and just the smell of cauliflower makes my stomach heave! How can people eat that stuff?! 🤢🤮 I think I would rate that as number 1 in my long list of disgusting vegetables. Would be right up there amongst the all-time most disgusting foods in general. Along with spaghetti bolognase, lasagne 🤮, anything bitter or tasting of vinegar (pickles? 🤢). And, as far as my body is concerned, tomatoes really are poisonous. Hense the aversion to lasagne. Just the smell of it makes my stomach heave now! I even had to stop eating butter chicken 😭 because I was getting sick every time I did, then I discovered it was because it's full of tomato.
Apparently plants in the nightshade family, like tomato, are known for not being tolerated by some people.
So, genuine intolerance of certain foods could possibly be involved sometimes, perhaps?

[defiantturtle]

I don't have ARFID (as far as I'm aware, at least), but I have used the term "safe foods" to categorize foods that I am always (or almost always) able to eat. Sometimes, my texture sensitivities to certain foods is worse than other days. For example, I love oatmeal and can usually eat it, but sometimes the texture of it can make me have sensory overload, nausea, or even sometimes can make me light headed. But I can always eat a few select brands of chicken nuggets unless I'm extremely nauseous. I believe for me this may be a combination of being autistic (because of the sensory issues) and having bad vasovagal syncope days (because I tend to have more problems with foods when I'm experiencing other vasovagal syncope symptoms like migraine, brain fog, and dizziness and/or after fainting).

[jme]

eating can be such a pain and i just don't have the energy to cook. i tend to like drive thrus, driving does not drain me but recharge me. i really wish we could just have a pill and be done with it. i eat to keep myself going. popcorn is a great dinner for me! as long as there is some sort of fuel i keep going

[petrichorbones]

when i first learned about arfid, i thought maybe it would describe my experience. when i was younger, i was constantly underweight, or just barely above the threshold of being underweight. i would go days at a time only eating small portions of my dinner, so my mom never knew i wasn't eating all day. i used to think i binged, bc i would hoard snacks and eat them at night.
but as an adult im not losing weight im just gaining it. eating is such a chore. i skip meals often still, and so many foods that would be simple and easy to have at home i cannot stomach. just the thought of eating eggs makes me want to throw up. i end up eating out bc some days i have an appetite for something somewhere, or i'll snack on cheese-its or chips. i've been eating just naan bread for dinner bc nothing else is appetising and i cannot even force myself to eat anything else. i get lunch on campus during school days but most of the time i just get a smoothie bc i cannot handle the thought of eating anything else. im currently 10 pounds heavier than pre covid and 20 pounds heavier than when i was in high school. but im still not eating normally. i dont know what to do. wanting to lose weight hasn't helped me at all, bc when i go hungry i'll get brain fog so i end up eating just to help motivate me and give me the energy i need to do schoolwork. i hate eating, i wish i didn't ever have to do it. (edit: typo)

[AvacadoStarbucks]

My son has the interroception based ARFID as well as HF Autism. Its been a real battle even as hes an adult as he's resistant toward his using his feeding tube now. Your video was very informational, thank you!

[quilavakass]

I actually looked into arfid before I looked into autism. When I first looked into it though I kind of thought my picky eating wasn't severe enough to be considered arfid, but over the past 2 years it's gotten so much worse. I no longer eat breakfast or lunch because I keep either feeling sick or I have intense anxiety reactions to food, especially when I'm at school. I keep taking lunches and giving to other people because I can barely even think of eating without having an anxiety attack. Some days are better than others, but it's all just a mess.

[ketikatz]

About a year and a half ago i got my ARFID diagnosis (kinda knew i had it, but thats when i actually had it documented for my therapist and doctor. Also got diagnosed with ADHD at the same time
My son is 2 and a half and he was just diagnosed with ASD (thankfully no signs of ARFID though, ive always tried to make sure his eating environment feels safe with no pressure)
But ever since i keep thinking that maybe im on the spectrum myself 🤷🏻‍♀️ since it took so long to get those other 2 it makes sense to me

[alihayman]

I also eat a lot of the same foods but never been diagnosed with ARFID