Wow this explains a lot. My ex girlfriend had this but we dint know what it was caused. She had a lot of problems and honestly I have some trauma from my experience with her.
Thank you for this. (Please consider leading with the article references in future talks.) I really struggle with meeting the nutrient needs of my 10yo who has an ASD diagnosis. M is strongly sensory avoidant, but never underweight because other adults in my family provide hypercaloric foods or unbalanced quantities of food from his preferred set on a regular basis. I was never able to get my pediatrician to take it seriously because M's consistently in the 85-95% growth rate on the chart. We live in Spain but I contribute Northern European genetics via America so the doctor always always shakes his head and says how 'enormous' my kids are (compared to Catalan and Spanish kids) when I express concern. I also once had a pediatrician say (unhelpfully in front of M) that it was fine that he didn't eat vegetables as long as he was eating fruit (which might be true re: fiber, but not nutrition generally as I understand it.) They did allergy test him but none were revealed. I tried to be guided by Ellyn Satter's method but it hasn't really worked for us, the exposure doesn't lead him to eat more nutritious foods very often. When I put out a buffet of reasonable choices his twin blows through like a tornado leaving a little of what he knows his brother will actually eat. I appreciate the 'don't be a snob' part of Satter's advice because we're still rotating through the one variety of breaded fish, one type of sausages, etc little kid type protein meals that's the difference between some or none for him. Family meals are just hard. My husband has diabetes and is celiac, so he's modeling restricted eating to avoid making himself ill. I have some of my own ED issues, which can be triggered by trying to help my kids eat well. Twin brother would happily eat to the point of vomiting, especially at his grandmother's table (ADHD may be a contributing factor.) I am frequently undermined by my husband and my in-laws who do things like serviing potato chips before a meal or preparing a completely different meal for M without offering what the family is eating. They often ask, "But what will M eat!?" in front of him as they plan, undermining the idea that he's perfectly capable of joining us for what we're eating. It's culturally normal to see inlaws most weekends, so this is no small influence. I swear the whole calendar is saint's days and holidays 'requiring' special desserts. M rejects food based on its smell and appearance on a regular basis and when it does pass his lips it's rejected for texture or taste nearly all of the time. Our school doesn't allow brown bag lunch and afternoons were so traumatic for my kid that he was eating his fingernails instead and developing nervous tics. He once went an entire school year without sampling the hot lunch. (I have one note from kindergarten that says he ate a vanilla pudding and napped 30 minutes, like that was a great accomplishment for an entire school year.) M comes home for lunch at our house now, which is not so uncommon in Spain, but it's socially limiting for him. He does not like traditional Catalan/Spanish food (imagine an ARFID/ASD eater stting down to paella!) and the closest we come to the Mediterranean diet is a few chick peas in a ramekin and tolerance for olive oil on the waffle iron. Even plain pasta is a struggle. When I do feel 'empowered' to put a little more pressure on M to eat very small quantities of non-preferred foods I'm alarmed by his tendancy to literally gag on food. He was slow to adapt to solid foods (relative to his twin brother at least) and had ear infections/pain swallowing for much of this adaptation period. If he doesn't like something he doesn't always chew it long enough. It's hard not to send mixed messages on food because I feel like without some guidelines around portion he'd eat no variety. So for example I say not more than one banana, one Greek yogurt or one cream cheese on bread per day. I focus on getting him to choose a protein and vegetable (almost always low-salt deli turkey and a small piece of red pepper, which isn't even really a vegetable) for every lunch and dinner that doesn't have a different already-preferred protein. Spanish advice would eliminate drinking milk once kids can walk, but I was raised on milk with every meal and think it's good for him. He's 5'4" at age 10 and I'm sure dairy is part of that. Some advice says he'd be hungrier without milk and might eat more/differently without it, but we rely a lot on peanut butter and I personally can't get that down without milk. Sometimes I wish there were a target food list we could master so I could dial down my own anxiety getting food right for him. I don't mean to be 'orthorexic' about it but I definitely get the impression that everyone thinks I'm doing it wrong. (I have ASD, too and want to solve problems with research and logic. My mother 'gave up' on changing my restricted eating and I ate the same meals every day growing up until working in a restaurant helped normalize other foods.) We get vitamin A from mangos and some B vitamins from seaweed, the nori wrapped around plain sushi. He does eat a range of fruit, which helps with vitamins and minerals. I'm pretty sure it will be like this for most of his life. I would sleep better if I knew I wasn't 'neglecting' him because the 'family' approaches sure make me feel like this rests with me. M loves to read and isn't especially active or motivated to be with other kids. I was the same and it doesn't concern me much if school is his only social life, but teachers and the school counselor seem to think this should be a bigger part of his intervention. What do people do who can't afford a team of specialists, or whose specialists don't prioritize ARFID as an aspect of ASD? (This is internet overshare, but I don't get to speak about it in my native language where I live, so here I am. Thanks.)
Very reasonable, I just realized that Mario updated his favorite way to tackle ED and it's crazy! Although what he previously talked about was pretty decent, it was difficult to follow, I just go'ogled the latest by Mario Volpstein, it's so much simpler and potent now!
This is excellent. It enables the person with disordered eating to not blamed themselves. Thank God. So basically disordered eating comes from an inherited brain from previous generations. So activating the brain is the issue.
Thank you very much. I am reminded of my own self care...I've been "Walking on egg shells" for a very long time, and it's affected my Heakth. Self care, loving self compassion...both I will begin to give myself, so I an better prepared to be there for my Grandaughter, without walking on eggshells. ❤
As a Mother of 2 on the Autism spectrum, I can say if the ROOT is ASD, ARFID, anxiety, OCD are secondary or even tertiary. To medicate secondary or tertiary symptoms without strong support, for the root seems to only propel vicious cycles. One can say a child struggles with anxiety when the invisible disability doesn’t allow them to even feel the effects of gravity. And yet it is invisible because they are so high functioning and intelligent and humorous, my daughter has had seizures inability to integrate sensory overloading stimuli. It’s neurology =In the hard drive. If lights are brighter and sounds, or louder, certainly oral tastes and textures can be experienced and filtered. This video is very helpful. Yeah, I hope professionals don’t just focus on the ripple effects of the root cause.
We just found out that my eleven year old grandson has this. He is an anxious child, has panic attacks. Is extremely thin and has limited stamina. I had never heard of it before and am very glad there is now an awareness. He now is having therapy specifically for ARFID as well as therapy for anxiety. As a toddler he ate a much more normal diet. I don't know of a traumatic incident related to food when this started. I think it was more gradual, though his parents separated when he was about six. He was always a child who didn't want to cuddle with anyone except his parents and sisters. Even now he doesn't often want a hug from me, even though we are close in other ways.
My ARFID began when I was in my mid-fifties, after a brief illness. This was also abut a year after my Chemotherapy for cancer. My ARFID switches on and off like a switch. One day I'm loving my sandwiches but the next I gag at the smell of bread. This is frustrating to be sure. The Doctor was very clear and answered most of my questions.
Never knew I had an eating disorder basically my whole life. I now know I had aversive AFRID that later changed to other eating disorders?? I don’t know if there is a name for it or if it’s even an eating disorder, but I struggle sometimes with swallowing. I don’t know why or what triggers it, but it makes eating a chore and unenjoyable. I sometimes avoid social situations centered around eating and when I can’t, I will get extreme anxiety.
I was left with Undiagnosed ARFID for 17 years and just got diagnosed recently, thank you for posting this so my family and I can have better insight on what treatments to look for!
It is very nice to hear that there are fathers with similar experiences-suffering. I live in Greece and I feel alone. The doctors are inexperienced to my sons arfid-AN
I feel SO seen! When I was younger, I had the same experience as the first little girl she talked about. I choked on a jolly rancher and stopped eating solid food. I saw a therapist and got back to eating, but I’ve been picky my whole life. My family has been understanding, but my partner and his family were not. My boyfriend has finally KIND OF started to understand, but not exactly. I’m just now realizing I have this disorder, and I’m finally starting to seek treatment. Thanks so much for this 💖💕
I'm struggling with arfid. Underweight, celiac and few allergies but only have Medicare so super hard to find help. I'm trying to get help from therapists.
You can do it! The hardest part is the barrier to new foods. It’s financially beneficial to prepare them yourself but with a history of a limited pallet its not like cooking is a very developed skill, or even being able to find something new that isn’t too intimidating in the first place. The fear of food waste is another one, especially when eating out as it’s much more costly, so home prepared just makes more sense. There are online support groups comprised of people going through it that share their safe foods with each other and suggest ones that may help expand your comfort zone. I’ve had it since I was a child and at 31 I’m tired of it and am hoping medicating my general anxiety with mild medications will help. You got this.
I’m 68 years old and a couple of months ago I developed an aversion to food. It started slowly with just not eating all of my food. I will put the rest in the fridge to go back and eat later but never would and then threw it away. Now I’m down to 112 pounds and I’m not interested in food at all. No food. I know this is really focused on children but this is happening to adults. I’m not able to get help anywhere! I cannot keep losing weight!
I'm wondering if I somewhat fall into this catergory as well. My dad passed away in 2020 from a massive heart attack, which I was directly involved with. He, and other members of my family, have history of heart issues (high BP, high cholesterol, etc), and so I decided to get tested. I got the wake up call when my cholesterol hit 350. I was terrified of having at heart attack, and so I started cutting out-or drastically reducing the amount cholesterol I was consuming. Even though I now have my cholesterol at a very healthy level (through the help of medication), I still get these fear of developing the high cholesterol, and it's really messed with my relationship with food. I'm working with an intuitive eating/HAES based dietician to help with this. This includes having a "diagnoses" (for insurance reasons), of having an eating disorder, but not otherweise specified.
I hope your doing well ARFID as well as other eating disorders have NO REAL TREATMENT, you can get treatment plans but really it is a mental obstacle you have to overcome yourself, especially arfid and as an adult sometimes you do just have to slowly force yourself to scarf food down, even if it’s just a small meal you have to have many small meals throughout the day
Thanks for educating about something that can be quite emotional to talk about. Everyone deserves to live a life that is full of good health, rightful purpose, and happiness in communities that support that. Thanks for shedding light on a topic that often is misunderstood and not properly cared about. This discussion has provided insight into reasons as to why these disorders begin and continue with the central focus being clear in solving that problem. Thanks for being problem solvers and promoting good health for all!
I can’t tell you how good it is hear these things from y’all. Feeling a bit alone. It’s a marathon that starts with a sprint is exactly what I hope this is, definitely in the sprint mode now
