The Blueberry

I vividly recall the moment I realized my son had an eating disorder, except I wouldn’t have called it an eating disorder then, let alone known what to name it. He was 3 years old; it was the early 2000s, and ARFID as a formal diagnosis didn’t exist until 2013. I was trying to get my son to try a blueberry, a single blueberry, which he was repeatedly and insistently refusing. He very much wanted to go outside and play with the neighbor. So, I resorted to a classic parenting strategy, the bribe: “First try the blueberry and then you can go outside.” After a longing glance out the window, he brought the blueberry toward his mouth, retching as it approached his lips. I’m not entirely sure what it was about this moment, but that is when I realized this was not an average run of the mill “picky toddler testing the limits of his power” situation. But what kind of situation was this exactly?

Hindsight is at Least 20-40

Looking back, there were clues. As an infant, breastfeeding my son was a challenge—getting him to latch—getting him to stay awake—in general, getting him to consume enough. Nurses would measure him before and after each feeding. We would literally count every fraction of an ounce consumed by his little 7-pound body. The switch to formula was tricky too. The first brand we tried led, without exception, to projectile vomiting—poor guy. The pediatrician literally advised us to try out different formula brands, and we were able to find one that stayed down. He gained weight, always on the thin side but enough to avoid any designated ‘failure to thrive’ from the medical community. As a preschooler, he was able to share that his “belly felt hot,” which led us to the diagnosis of persistent reflux and varied courses of proton-pump inhibitor medications. Still, there was more to the story.

Coping with Sensory Superpowers

Through grade school we relied heavily on family meals that could be adapted to meet everyone’s needs. I recall many variations on pasta. Based on advice from a friend and fellow SLP, we implemented a “try as you can” approach. Everyone at the table was encouraged to try a little of each food. Trying a food consisted of getting as close to consumption as possible, which often ended with smelling it, kissing it, licking it, or simply tolerating it on the plate. After trying what was offered, access to one’s safe foods was always an option. To this day, our household staples include peanut butter, noodles, apple sauce, carrots, broccoli, and cheese pizza. To be clear: even relatively minor variations in these items mattered. Our son could differentiate differences in the brand of butter. He could smell the presence of a lone slice of pickle on a grilled cheese sandwich before removing its paper wrapping. He could tell by taste when a mainstream fast-food chain switched an ingredient in their chicken nuggets. The boy had sensory superpowers, and a highly attuned anxiety response. I came to realize that asking him to eat a blueberry was kind of like someone asking me to try a bite of human excrement.

Hello Wisdom, Goodbye Guilt (Mostly)

It wasn’t until middle school that I asked my son’s pediatrician for an appointment with a nutritionist. I was concerned about whether his current diet would be able to fuel his adolescent growth, which was shaping up to be substantial. The nutritionist instructed us to bring a list of all that he had eaten in the last 3 days. I took notes and braced myself for her judgement. I was worried she would pile on to the incessant communal commentary on how my son’s eating habits weren’t measuring up. My first impression of her did little to allay my fears. She looked decidedly grandmotherly when she called us back from the waiting room. But her age brought wisdom over judgement. She looked over the list of his 3-day diet and dismissed me and my maternal guilt in one statement, “There are two things you cannot make your child do: sleep and eat.” I felt seen. She then turned to my son and asked him directly, “Do you want to eat differently?” He seemed unprepared for the direct question but open to discussion. By the time we left her office, he had agreed to try one new food: fresh spinach, and I had agreed to focus more on getting him calories, and less on the source of them. It was a gift that somehow allowed us to nourish his adolescent body to its full 6’2” frame. Still though, no mention of ARFID. Ironically, our visit to that nutritionist was just a couple months after ARFID was first designated as a formal diagnosis by the American Psychiatric Association in 2013.

Diagnostic Disclosure

I truly don’t know when I first learned about ARFID. I’m guessing it was through my engagement with the autism community. But I know as soon as I read the description, I knew it fit my son. For starters, he ate fewer than 20 different foods, and most of them were variations of bread and cheese. He had a history of difficulty consuming enough food to meet his energy needs, and his restricted diet was not due to body image concerns. Instead, it was driven by sensory needs, anxiety, and reduced appetite.

Full disclosure: I don’t think my son has ever received a formal ARFID diagnosis, and he recently told me he doesn’t feel the need for one. He says it’s not a big part of his identity and is just one of the quirky things that makes him who he is. I fully respect that. It’s not like ARFID has a strong self-identity community. I like to think that perhaps he doesn’t have a need for the ARFID diagnosis at least in part because me learning about ARFID helped prevent him from needing one. Understanding ARFID offered a fresh perspective that helped me “lean out” of power struggles around food and “lean into” curiosity, empathy, and relationship.

Research, Resources, & Solidarity

My parental journal helped motivate my recent study with Dr. Jamie Mahurin-Smith focused on eating behaviors and attitudes toward food in disabled college students, presented here at the American Speech-Language-Hearing-Association Convention. The study echoed several aspects of my family’s experience, illustrated unique personal paths, and identified the trauma and harm that can result from misunderstandings around eating disorders. To be clear, I am not here to judge any other parent’s journey. Being able to feed our children is one of the most primal human instincts I can imagine; community supports are limited; and eating disorders can literally include life-or-death consequences. What I offer here is solidarity and some resources for those looking for more information:

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders, 5th ed. American Psychiatric Publishing.

• Provides the specific diagnostic criteria for ARFID

ARFID Awareness UK. (2025). https://www.arfidawarenessuk.org/

• A registered charity in the UK dedicated to raising awareness about ARFID

Białek-Dratwa, A., Szymańska, D., Grajek, M., Krupa-Kotara, K., Szczepańska, E., & Kowalski, O. (2022). ARFID—Strategies for 857 dietary management in children. Nutrients, 14(9), 1739.

• Cogent description of ARFID, helpful dietary information, & useful screening questions

Cobbaert, L., Millichamp, A.R., Elwyn, R., Silverstein, S., Schweizer, K., Thomas, E., & Miskovic-Wheatley, J. (2024). Neurodivergence, intersectionality, and eating disorders: A lived experience-led narrative review. Journal of Eating Disorders, 12(187), pp.1-29. Open access at https://pmc.ncbi.nlm.nih.gov/articles/PMC11580580/

• Insightful review of eating disorders in neurodivergent populations informed by scholars with lived experience. Findings highlight the role of sensory processing differences (extero- and interoception), the potential risk of exposure-based techniques, and the need to consider potential harmful effects of intervention.

Lane-Loney, S. E., Zickgraf, H. F., Ornstein, R. M., Mahr, F., & Essayli, J. H. (2022). A cognitive-behavioral family-based protocol for the primary presentations of avoidant/restrictive food intake disorder (ARFID): case examples and clinical research findings. Cognitive and Behavioral Practice, 29(2), 318-334.

• Useful overview of distinct clinical presentations of ARFID and varied treatments

Note: As is my habit, I am posting this narrative with my son’s input and permission.