Real stories from parents who have kids who have ARFID

Real stories from parents who have kids who have ARFID

Parents who have kids with avoidant/restrictive food intake disorder (ARFID) face challenges not just in feeding their kids and keeping them healthy, but also in accessing treatment.

ARFID is an eating disorder. Its symptoms include strong food aversions and food avoidance. These symptoms exist without the desire to lose weight or change the body size or shape.

ARFID is characterized by food fear and anxiety and can lead to malnutrition. Thus, it is a physically dangerous condition that is often misdiagnosed due to lack of awareness and understanding. It has been observed to frequently coexist with anxiety disorders and has been associated with autism spectrum disorder. Many times it is first observed when the child is very young.

In younger children, ARFID is often dismissed as “picky eating,” leading to under-treatment. In adolescents, ARFID is often misdiagnosed as anorexia, which can lead to inappropriate treatment.

We have gathered stories from parents who have a child who has ARFID so that we can better understand this eating disorder from their perspective.

What is ARFID?

ARFID is characterized by an aversion to eating. People who have ARFID may avoid eating because they fear vomiting or choking. They may also be disgusted by certain food textures, colors, appearances, and smells. As a result, they tend to have a very limited diet. Here’s how parents who have kids who have ARFID describe their child’s symptoms:

“She began making proclamations about food that she used to eat but just said she didn’t eat anymore: I don’t eat chicken, I don’t eat peas, broccoli, casserole. Her lunch box started to come home full every day. When she stopped eating every other filling on her sandwich except tomato sauce or jam, I got worried.” – Anonymous mom of a daughter

“He had an extremely limited diet that progressively got worse year after year and developed an inability to eat in social situations, with friends, school camps, etc. He has high levels of anxiety around food and rigid food rules around color, shape, texture, and brands.” – Kelly

“He refuses foods based on sensory characteristics, has a fear of food, a hatred of food and food smells, and social anxiety around food. He throws up if he experiences an unsafe taste or texture. He has a severely limited diet and is basically surviving on milk and baby biscuits/snacks.” Issac’s Mum

“[My child experienced] significant weight loss, malnutrition, fatigue, withdrawing from friends, extremely selective and rigidity in foods. It is not just a child being picky nor is it related to an obsession with body image, weight, etc.” – Kristin

“A lot of it doesn’t make sense. You worry about them a lot. I despaired a lot in the beginning.” – Anonymous

“My son has never opened his mouth to try new foods. We offer him whatever we are eating every meal but he refuses to even try it. The look in his eyes is fear. Before he could talk, he used to scream and cry the moment you put food near his mouth. Now he just politely says “no” but if you keep encouraging he will scream and cry and turn his head away.” – Megan

“When we heard about ARFID, we dismissed it because it usually is connected with people who have a fear of choking or some other fear surrounding the act of eating. Once we found out that it can include kids who only eat certain colors, textures, brands, etc. without any reason at all, we realized that she fit into this mold and was not simply a “picky eater that will grow out of it”.” – Brenda

What it looks like

People who have ARFID typically resist trying new foods and worry extensively about getting sick as a result of eating particular foods. Here’s what parents who have kids who have ARFID have to say about what it looks like:

“She looks healthy and is growing “normally” but I worry about her future because her diet consists mainly of processed carbs. Also, food jagging is frustrating. Just when we think we have her eating something new, she eliminates the food she’s been eating forever. So when we think we’re up to eight safe foods, we go back down to seven.” – Krista

“She managed to stay normal on the growth chart through age 14, as she was eating limited yet high-calorie foods. Once she was in “malnutrition”, the only help we could find was for anorexia, which was FBT protocol. The eating disorder experts told us that the goal is to get the weight back on and FBT is the only proven way to do that. FBT is not easy to adopt with ARFID kids, as its goal is to take complete food control away from the kid (horribly impossible with ARFID) and to get them to “normal eating” again (ARFID kids were never normal eaters). We used some of FBT to get her out of the danger zone, then we stopped treatment as we were unable to implement what FBT requires long term.” – Brenda

“Since a child with ARFID cannot be bribed to eat food, you need to give them whatever they are willing to eat. You cannot starve them until they are hungry enough to eat. You do whatever it takes to get them to eat something.” – Megan

“Not all kids are underweight and can in fact be overweight due to high levels of carbs and sugar as preferred foods.” – Kelly

Why it’s hard to treat

ARFID was only added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013. It is poorly understood and there is little in terms of evidence-based treatment. Here’s what parents who have kids who have ARFID have to say about why it’s so hard to treat:

“We have enlisted a food therapist for three years, yet no new foods have been added. We have seen professionals who have made the situation worse as they have no knowledge of this disorder.” Anonymous mom of a son

“I still have not managed to find a health professional in Brisbane who knows about ARFID to diagnose my son. Every time I speak to a doctor, they have never heard of ARFID and would tell me that I am self diagnosing and that my son is just a typical fussy toddler.” – Megan

“Trying to find a therapist who knows ARFID is impossible. And we live in the Bay Area where Stanford and other medical facilities have many resources, but all we are finding is typical anorexia therapy.” – Brenda

What it feels like to parent a child who has ARFID

All eating disorders are disruptive for the families. They are challenging and complex. ARFID can be particularly difficult due to the lack of awareness and understanding. Many parents report feelings of shame and despair. Here’s what parents who have kids who have ARFID have to say about what it feels like to have a child with this condition:

“When they lose safe foods and you start to think they will literally starve to death, it’s absolute panic mode. Which only makes things worse.” Anonymous mom of a son

“There is a lot of judgment from other parents and people in general who do not understand or are not aware of ARFID. A lot of people think that the child is not eating because the parents are not strict enough or that you spoil them too much by giving into what they want. Others may even think that they don’t eat because you’re not a good cook. It’s really taken an emotional toll on me. The anxiety of having a child with ARFID is hard enough let alone the judgments from family and friends that come with it.” – Megan

“I have learned to focus on her strengths. I have learned to accept that we are having spinach pie, her No. 1 safe food, for the 3rd time this week.” – Anonymous mom of daughter

It’s a family affair

ARFID, like all eating disorders, doesn’t only impact the person with the disorder. It impacts the whole family and peer relationships. It can be challenging to eat a family meal when one person resists food. It’s also very difficult to eat socially. Here’s what parents who have a child who has ARFID have to say about how it has impacted their family:

“It not only affects the child and the immediate family. It affects everyone in that child’s life. We have to plan when going to visit relatives to make sure we have something on hand she can eat (I refuse to put that stress on others). I have to pull friends’ parents aside, when she’s having a playdate at their house or over for a party, to explain that her refusing to eat the pizza they ordered for everyone is normal and that they should not worry about it. (I either feed her beforehand or send a snack with her).” – Krista

“It is destroying my family. I feel like nobody understands, as if everybody blames me for causing it. As if they are dismissing me as a manic parent. I have to find money to pay for private treatment as I need to do something. It’s hard seeing my little boy so sad and him telling me he hates life and doesn’t want to be here anymore – all because of food.” – Issac’s Mum

“[This is causing tremendous] stress on the family. Screaming and crying at every meal is just insane to cope with. We need some rest but nobody will look after him at mealtimes. It sucks your soul. My son is super severe and I get that sometimes it is untreatable but it’s heartbreaking to force-feed my son three times a day.” – Claire

“You know that they won’t eat their aunt’s roast chicken or bread rolls with seeds on them and they have a meltdown in front of the whole family at the BBQ. There is nothing for them to eat and they are hungry and you didn’t bring anything because your brother said he will make sure there are plain rolls. But he doesn’t really understand what a few sesame seeds on the top of a bread roll mean to a kid with ARFID. My dear Dad drove back to the shops and bought a pack of plain rolls and a jar of peanut butter and a tub of cherry tomatoes so that she could eat something.” – Anonymous mom to daughter

What parents wish people knew about ARFID

One of the most important steps we can take to help parents who have kids who have ARFID is to understand their situation and have compassion. ARFID is tricky and there is rarely a quick fix. Here’s what parents who have a kid who has ARFID would like other people to know about it:

“I wish people knew that it’s not just picky eating and it’s difficult seeing your child have such significant anxiety. Also that it’s not a result of poor parenting or entitled children.” – Kelly

“I wish there was more awareness around ARFID. The fact that it is a genuine eating disorder and that you really need to break all of the typical rules around feeding and eating when you’re dealing with a child with ARFID.” – Megan

“I wish people would get it out of their heads that you can force a child to eat, or they’ll eat when they’re hungry. When you’ve seen a child with ARFID interact with food, you see how difficult it is for them. Yes, everyone has certain foods they don’t like. Some people even have foods they physically can’t eat without gagging. But ARFID is extreme. ” – Krista

“I wish people knew that it’s not a junk food diet. That I have tried everything 10 times over. That it is hard and their judgment hurts – that yes I have tried this and that and a load of other stuff besides. That no you don’t understand if you are not living it, and commenting on how hard being out socially for food with us is not helpful.” – Isaac’s Mum

“I wish people understood that no, she won’t eat when she’s hungry. She’ll feel hunger but still won’t eat even in a house full of a variety of great food. Even as a baby, the doctors told me she would eventually take the bottle from her dad when she got hungry. It didn’t happen. She waited until I was accessible to nurse.” – Brenda


Want to learn more about ARFID?

Terrible, Thanks for Asking Podcast Episode 74: ARFID

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