My son was scared of food

Tehrima Rai spent years being told her son was “just picky.” Relatives blamed her parenting, and she struggled to get help. But Tehrima, a pediatrician herself, trusted her instincts and kept searching until she found the real answer: ARFID, an extreme fear of food that’s more common in neurodivergent kids. Through feeding therapy, logbooks, and her own experimentation, she helped her son eat — and finally healed deep wounds of her own.

• Listen: Why I stopped hiding my kid’s neurodivergence

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Jessica Shaw: When you're raising a child who's neurodivergent, the milestones you celebrate don't always look the same as other families. For Tehrima Rai, one of those milestones came about a year and a half ago, when her son was seven.

Tehrima Rai: I still remember when he tried one single grain of rice one day without gagging. I was the happiest mom on the earth.

Jessica: Yes, you heard that right, one single grain of rice. For almost as long as Tehrima can remember, eating has been a struggle for her son. For years she couldn't figure out what was wrong. People would tell her he was just a picky eater or that she just needed to serve him different foods. But she knew that wasn't all. Her son ate almost nothing, and even the sight of someone else eating would send him into a meltdown.

Tehrima: So he had a lot of gagging. He would start throwing tantrums, continuously crying. We were not able to attend any birthday events, we were not able to sit in a family get-together, we were not able to go out and eat outside. It was very challenging for us. And people were interpreting it not as a food challenge or sensory challenge. They were thinking that we do not want to hang up or we do not want to take part in other activities and stuff.

Jessica: It turns out that Tehrima's son has ARFID, which stands for Avoidant Restrictive Food Intake Disorder. It's a relatively new diagnosis. It was just added to the DSM in 2013. While it might sound like food aversion, it's more like an extreme fear of food, and it's more common in neurodivergent kids.

But it took Tehrima years to get that diagnosis. In part because she was balancing a lot. She was adjusting to a new country as an immigrant from Pakistan. She was socially isolated and working hard to pass her board exams so she could get certified as a pediatrician here in the United States. And on top of everything, she says she was trying to extract herself from an abusive marriage.

It's hard for me to imagine how she handled it all. But there's one part of Tehrima's story that I relate to so keenly. It's that process that she and so many of us moms have been through where we have to step into the role of detective, researcher, and even diagnostician when no one else seems to be taking our child's struggles seriously. This is "Everyone Gets a Juice Box". I'm Jessica Shaw.

(02:33) Jessica and Tehrima discuss the early challenges of her son's feeding issues and the quest for a diagnosis.

Jessica: So you are a developmental pediatrician and a mom, and it sounds like you had to tap into both of those parts of you to parent your son. You said he's had challenges since he was young, so what did you first notice and what were those challenges?

Tehrima: So as an infant, I did notice that he was very particular about the temperature of the milk bottle. It kept progressing. So when I added the solid diet at six months of age, everybody was telling me maybe he doesn't like the brand that you're using. I tried already-made food purees that are available in the market, I tried home-cooked. But he would just reject everything.

Jessica: All of this was extremely challenging, but Tehrima got her son to drink enough milk that his weight stayed on the low end of what doctors consider normal. Then her son started school.

Tehrima: Starting the pre-K level, when the child has to go to the school and you cannot give them the milk bottles every three to four hours because they have to be in the school, he would literally stay hungry the whole day from 8:00 a.m. to 2:00 p.m. He would just avoid anything related to the food.

He would not go to the lunchroom. If there is a kid who is eating, he would literally put his hand on his mouth, gag, and stay away. And he gradually developed a lot of avoidant behaviors.

Jessica: Because of those behaviors and some other developmental delays, Tehrima's son was given a diagnosis of autism when he was four. He began speech therapy and with that came some breakthroughs in his ability to communicate. Still, the feeding problems continued.

Tehrima: I do remember telling his pediatrician and his developmental pediatrician that we are really struggling with the food aversions. But I think the way we look at — like most of the people, they look at it — they look at it as a part of autism and sensory processing problem. Not a separate diagnosis.

I did feel all the time it's more than that. Because he would literally run away if I ate any type of food. He would refuse to kiss, he would refuse to hug. And if I ate something maybe 30 minutes ago, and I am trying to hug him and we're playing together, if he would smell it from my face or lips — if I still have some food smell around me — he would literally gag and run away.

And if I tried to expose him to the new food — okay, maybe you can just touch it, maybe you can play with it — only with the sight of food, he would gag. And as he was growing up, as a six-year-old and seven-year-old, I noticed those panic symptoms in him. He would start pacing back and forth. Also he was having more language and he was able to express. I was like, there was a significant part of anxiety to it.

Jessica: How did he express with language what he was experiencing?

Tehrima: Yeah, so he started saying, "I'm so scared. I'm scared, mommy. I don't like it. I'm scared." So that word was so consistent with him. I was like, he's definitely scared of food. It's like a phobia. And same thing I noticed when we are, for example, even with mentioning of, "Let's go out for a dinner, let's find a restaurant," even if we are walking on the street and I'm like, "Hmm, mommy's hungry, can I go grab some chicken?" "No, mommy, no!" and he would get scared, he would drag my arm away.

His weight was dropping. His weight went below third percentile and it stayed there for like three or four years. People would just say, "No, you have to try this, you have to add that." But I knew from deep inside it's not only the regular food aversion, it's something else. Then I started reading about ARFID, then I started talking to the doctors about it.

(07:52) Tehrima describes the isolation and blame she faced from her family and social circle regarding her son's eating habits.

Jessica: You were hearing from people that this was all your fault as a mother. Who was telling you that?

Tehrima: The family, relatives, siblings, parents. So I came to United States as a part of marriage. My ex-husband sponsored me. What happens in our culture, we live with our partner, their parents, their siblings, and their siblings' partners. And also because I was also living a very isolated life, I did not have many friends. So those were the only people that I was living with and they were telling me that.

And especially the background where I am from, mothers tend to get blamed very often.

Jessica: Well, that's an international phenomenon, actually.

Tehrima: Yes, yes. I was also studying for my exams, and I was being told, "Since you are just focus on your career, you're not teaching your child how to eat, you're not raising your child good." So that was another thing, and it actually came with a lot of self-doubt and a lot of blame. And I actually felt that I don't have a capability of being a good mom.

Jessica: It wasn't only her relatives who made her feel that way. One time, shortly after her son got his autism diagnosis, she had a virtual meeting with a developmental pediatrician who knew Tehrima herself was a pediatric resident. After the call was over, the audio remains connected, and she overheard the doctor say the whole thing was BS. The way she understood it, it seemed like he was disgusted that she hadn't sought support services for her child earlier.

Tehrima: And I do remember after that session ended, my son was at the school. I left my apartment. I wanted to cry so bad. I could not hold it inside. I went to the park and finally found a quiet corner under a tree, and I cried with my lungs out. I thought, "Yeah, maybe he's right." And I felt like a failure.

I'm in residency in general pediatrics and I'm a doctor. And how come I have never been able to get any therapy or any services or any diagnosis to my son and who is four years of age? That word, that this is a BS, still stays with me.

And in my daily work, when I sit with the families and parents, I try my best to not judge them or blame them. Because we do not know what they're dealing with at that point. If I have a patient who is older, school-going age, but he has severe developmental disorder but is not receiving any services, that's not the parents' fault. We don't know what struggles the parent is going through.

Jessica: Tehrima never told that doctor what she was going through, but at the time she was dealing with a lot. On top of her son's diagnoses and her struggles to feed him, Tehrima was also trying to summon the courage to leave her marriage. Ultimately, it was her desperation to get help for her son that would finally lead her to advocate for herself.

Tehrima: As a parent, I think when you hit a point where you are like, "Whatever, I have to fight for it, even if I have to lose my family." So I think when I stood up as a mother, I was stronger than I was when I was trying to stand up as a woman, I would say. So emotionally I was not hopeless, I would say, I was desperate to get help.

Jessica: Tehrima finally did leave her husband and find help for her son. She'd eventually get him a formal ARFID diagnosis, targeted treatment, CBT therapy, and more. But even before then she'd figured out a lot on her own. She read everything she could about different types of eating disorders and sensitivities, and she became a kind of one-woman research team, experimenting and throwing rules about proper nutrition out the window.

So what would happen when he came home from school? When he wasn't eating the entire day. Tell me what dinner — it doesn't sound like you were sitting down for a dinner — but what did it look like trying to get food into him?

Tehrima: So first of all, he did not have hunger cues. He would never tell that he's hungry. That was one of the problems. And the other problem was that he would literally eat only chocolate flavor for a longer period of time, chocolate chip cookies. So I would literally just open the full package, sit with him, and give him how many cookies he want to eat, he would just eat. I would not force him other foods.

And then it would shift from one food item to the other food item. And I do also remember he would just eat Skittles. So I gradually started introducing using the bowl and plates because he would just eat snacks here and there. I was like, "Okay, so that's our plate. I'm going to pour your Skittles in your bowl and mommy's going to sit with you and mommy's going to share your food and that's our dinner today." So that's how I started working on telling him that there is a mealtime, at least.

(14:03) Tehrima recounts the breakthroughs in her son's feeding therapy and the joy of their first meal at a restaurant.

Jessica: When did things start to shift as far as his ARFID?

Tehrima: When we started feeding therapy. But actually before that. Because I started learning about this whole disorder myself. So my goal was not to feed him new food, my goal was to make him comfortable around the food. For me, things started working when he wasn't running away when I was eating. So I think it's very subtle, but very progressive growth or improvement, I would say.

Jessica: So what foods would you try to give him exposure to?

Tehrima: So there were multiple. I have been working on it for almost three years now. I started expanding on the pasta group. So I would boil different types of pastas and put ramen seasoning. And I would use the same seasoning for everything. So that was his first food, actual food, that he started eating.

And right now you would get surprised, he eats beef hot dogs, he eats bread and Nutella, he eats two or three spoons full of rice. So it's gradual building up on the food groups. He also started eating a few bites of apple. I have logbooks at home in the kitchen drawer and there are three stickers: thumbs up, in between, thumbs down. Whenever I do the exposure, I write the time and the date, I write the food, and I write the reaction that he has. Was there any grimacing? Was there any avoidant behavior and what was it? Was there any gagging? And then I have him put the sticker on it and then we build up on that.

Jessica: How did it feel when at the end of the day, sometimes he did eat food? How did that feel to you?

Tehrima: So I would literally get excited if he would eat a little more than the previous day. I would get excited, I would celebrate. Even if he tried a new food. I still remember when he tried one single grain of rice one day without gagging. I was the happiest mom on the earth.

Jessica: Tell me about that day.

Tehrima: He ate rice! So what I was actually doing, trying to add the normal food, I would say, for us. Even like in my head, it's very hard to even start thinking about it because what happens and what actually happened with me, I was also becoming an anxious mom. Because he was anxious and I was anxious.

Jessica: I mean, you were dealing with a few things.

Tehrima: Yeah, yeah, you're right. So the first step of even thinking about exposing him to rice or bread, that was a big thing for me. And I remember getting a plate and putting a one single grain of rice and I'm sitting at the table with him. And I have rice in my own plate. Because that was also a dream for me. That I'm eating the same food that he is eating and he's eating the same food that I am eating.

I don't know how to express that feeling. But he was like, "Rice?" I was like, "Yes, you're going to eat a rice with mommy." So he pick up the one grain of rice. And it was hard for him because he was getting scared, but I told him, "You can touch, you can smell. You know mommy has been eating rice, you know it."

And then he put it in his mouth and he chew it. And I looked at his face, no gagging. Excited. And I still remember he was also very excited and happy that he's eating the food my mom is eating. I felt liberating. I felt like I finally achieved that I have been trying to achieve since last seven years. And again, another feeling that was really helpful — that okay, it was never my fault.

Jessica: In that moment did you feel that?

Tehrima: Yeah. It was never my fault and all the people who have been telling me it was my fault, that was not my fault. And with all those little achievements, I was healing. And I was accepting myself more. So goes both ways.

Jessica: You were healing him and you were healing yourself.

Tehrima: Yes, yes.

Jessica: And is he able to — I mean he's nine years old now, right? So what grade is he in?

Tehrima: He's in the third grade.

Jessica: Are you able to go out to dinner? Is he able to go to a friend's?

Tehrima: Yes, so we are able to go out. He sits with us in the get-togethers. He tries new foods.

Jessica: What was it like for you the first time you were able to go out to dinner with him?

Tehrima: It was so exciting.

Jessica: Do you remember where you went out?

Tehrima: So we went to an Italian restaurant. Because he started eating pasta. And for the first time he ordered his own food! I had to tell them, "Okay, don't put any shredded cheese on it, he doesn't like it. Just boil the pasta, put a little bit of a sauce, do whatever you want to charge. But don't make the way you make." But he had his own bowl and he was eating. I took multiple pictures. And I just was so excited. I shared with everybody I knew. Like, "Okay, we went out for a dinner! We went out on a date with my son!" It was so good. Yeah. Yeah, I'm actually speechless, I don't know how to describe that.

Jessica: What is your son's understanding of ARFID and of his food issues now?

Tehrima: So he has a lot of language now. And after CBT and everything, he has gotten so much better at expressing all different types of emotions. So he tells about the food if it is junk, if it is healthy, if he's scared of the food, if he would like to try a new food.

So he talks about all different categories of food. That's our part of the process, actually. It's not only having him eat. So he understands that food can be scary, and for him food is scary sometimes, and he says those things to me.

And sometimes now, interestingly, he does the same thing to me. "No, mommy, eat! It's okay, mommy. Take a deep breath, mommy, eat!" So the beef hot dogs that he started eating, I don't like it. "It's okay, mommy, take a deep breath, tiny bite!" So he does the same thing to me, but he has evolved into this little man who can work around the food.

Jessica: Sharing a meal with the people you love is one of life's great joys. Food is so much more than sustenance. It's a form of connection, a way to understand one another. I still tear up thinking about the strides Tehrima's son has made and how food is finally bringing him and his mom together.

Thanks again to Tehrima for sharing her story. If you like conversations like this one, subscribe so you never miss a video. See you next time.

Thanks for listening to "Everyone Gets a Juice Box". The show is hosted by me, Jessica Shaw. It's produced by Julie Subrin and Anna Rothschild is our senior podcast producer. Video is produced by Max MacKenzie and edited by Lance Johnson. Our associate director of content development is Calvin Knie. Briana Berry is our production director and Neil Drumming is our editorial director.

If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to podcast@understood.org. This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson.

Understood is a nonprofit organization dedicated to empowering people with neurodivergence, like ADHD and dyslexia. If you want to help us continue this work, donate at understood.org/give. That's it for this episode of "Everyone Gets a Juice Box". Subscribe or follow the show so you never miss a conversation and send this one to someone who needs to hear it.