Ever tried convincing a cat to take a bath? That’s what mealtime felt like with my daughter. For years, I chalked up her eating habits to typical picky eating. There was the year she would only eat Microwave Kraft Dinner, not regular Kraft Dinner—and it had to be the “Three Cheese” variety, not the regular one, followed by the year of hotdogs, cheese strings and chicken nuggets. 

You get the idea. Little did I know, we were grappling with Avoidant/Restrictive Food Intake Disorder (ARFID), a condition that turned our dining table into a battlefield.

What is ARFID? Understanding the Disorder Beyond Picky Eating

So, what’s ARFID? Imagine a world where food isn’t just unappealing—it’s downright terrifying. Unlike your average picky eater who might turn their nose up at broccoli, individuals with ARFID experience intense anxiety around certain foods, leading to a severely limited diet. It’s not about being difficult; it’s about genuine fear and discomfort. 

For my daughter, the “feel” or texture of specific foods, their smells, spiciness, or even temperatures can cause feelings of revulsion, which often leads to gagging, throwing up, and tears.

Debunking Myths: ARFID vs. Picky Eating – What’s the Difference?

Let’s set the record straight: picky eating is a phase; ARFID is a disorder. Picky eaters might refuse spinach today and devour it tomorrow, or they will give in with time and persistence. Those with ARFID have a consistent aversion that can lead to nutritional deficiencies and social challenges. 

It’s not a choice or a quirk—it’s a serious issue that needs understanding. And for the love of the goddess, don’t blame the parents and suggest they should force-feed their children. It might work in the short term, but you’ll only be adding to their trauma and anxiety and creating more problems in the long run. Oh, and they’ll likely never trust you again…so there’s that.

From Kitchen Nightmares to Lightbulb Moments: Recognizing ARFID in Children

Picture this: I subscribed to a fancy cooking kit, thinking exotic recipes mailed to our doorstep each month would entice her. Spoiler alert—she loved cooking but wouldn’t touch the food. After countless failed attempts and a mountain of uneaten meals, the lightbulb finally went off: This wasn’t just picky eating; it was something more. Here are some signs your child might have ARFID:

• Menu Monotony: If your kid’s diet makes a monk’s look adventurous, sticking to the same few foods day in and day out, it might be ARFID.
• Nutritional Nosedive: Noticing your child looking more like a wilted lettuce than a vibrant veggie? Fatigue, dizziness, or stunted growth could be red flags.
• Weight Woes: If the scale’s stuck or moving backward despite your best efforts, and your child isn’t growing as expected, it’s worth a closer look.
• Sensory Snubs: Does your child treat certain textures, tastes, or smells like they’re toxic waste? This extreme aversion isn’t just being fussy.
• Fear Factor: Is your child convinced that eating will lead to choking, vomiting, or other disasters, even without past trauma? That’s more than just nerves.
• Mealtime Meh: If getting your child to eat feels like pulling teeth, and they show zero interest in food, it’s a sign something’s up.
• Social Sidestep: Avoiding birthday parties or family dinners because of food? When eating habits start dictating social life, it’s time to pay attention.

The Emotional Rollercoaster: Coping with ARFID and Autism in the Family

Navigating ARFID alongside autism? It’s like juggling flaming swords while riding a unicycle. The constant worry about her health, coupled with unsolicited advice from well-meaning (but clueless) folks, was overwhelming. But understanding that her eating habits weren’t a choice allowed me to approach mealtimes with empathy and a dash of humour. Here’s a list of more challenges faced when your kiddo has ARFID:

1. Lunchbox Dilemmas: Managing ARFID in School Settings

Packing lunch became a daily game of “Will She Eat It?” Spoiler: she usually wouldn’t. The fear of her going hungry or facing judgment from peers was ever-present. Collaborating with school staff to ensure she had access to safe foods was essential, even if it meant becoming “THAT” parent. 

And the constant reminders to sign up and pay for pizza day? Why spend money when it’s not the specific type of pizza she’ll eat? That’s one good thing about ARFID: you’ll spend less on hot lunches at school.

2. Sleepover Survival Guide: Preparing for ARFID Away from Home

Sleepovers should be fun, right? Not when you’re packing a cooler full of “safe” foods and giving other parents the ARFID 101 crash course. Explaining her eating habits often led to raised eyebrows and awkward silences. But hey, at least she didn’t starve. And she got some much-needed social interaction, although THAT didn’t always go as planned. But that’s a topic for another blog.

3. Growth Charts and Grocery Lists: The Health Impact of ARFID

Her limited diet had me on a first-name basis with her pediatrician. And that wasn’t necessarily a good thing since I didn’t really like the man, and he most certainly didn’t like me. That’s another thing you’ll find as you balance the many nuances of autism parenting and co-existing conditions like ARFID. Often, you’ll know more about your kiddo and their struggles than the “supposed” experts. 

This can be infuriating. 

Luckily, I had specialists to fall back on, and their support and validation gave me the strength I needed to fire him. Trust me, that was the right decision, and our GP stepped in and is doing a fantastic job—all without the constant old-school and somewhat sexist judgment from his predecessor.

Monitoring your child’s growth and ensuring she got the necessary nutrients when dealing with ARFID felt like a full-time job. When your kiddo only eats a specific brand of her “approved” foods, shopping trips often become scavenger hunts, requiring trips to three or four different stores to make sure you can find everything she’ll eat.

Regular check-ups and consultations became our norm, highlighting the importance of the right kind of professional guidance in managing ARFID.

Trial and Error: Our Attempts at ARFID Management

I tried it all: tough love, sensory play, and bribery (don’t judge). Some methods brought small victories; others were epic fails. The journey was a rollercoaster of hope and frustration, teaching me that progress isn’t linear and that sometimes, you just have to laugh to keep from crying. Here are some strategies recommended by experts that worked (and didn’t) for us.

• Baby Steps with New Foods: Introduce new foods at a snail’s pace. Start with a microscopic nibble and gradually work up to a full bite. Rome wasn’t built in a day, and neither is a diverse palate.
• Sensory Shenanigans: Turn mealtime into a sensory playground. Let your child squish, sniff, and even play with food. Engaging their senses can make unfamiliar foods less intimidating.
• Routine Rules: Establish a mealtime routine that’s as predictable as your morning coffee (or hot chocolate for my fellow coffee haters). Consistency can create a safe space for your child to explore new foods without the element of surprise.
• Positive Vibes Only: Celebrate every tiny victory like they’ve won an Olympic medal. Positive reinforcement can encourage more adventurous eating. Just remember, no pressure—nobody likes a food drill sergeant.
• Therapy Tag-Team: Consider enlisting the help of a professional, like a feeding therapist or psychologist. Sometimes, it takes a village—or at least a trained expert—to navigate the ARFID maze.

We’ve tried everything mentioned above, some with more success than others. For us, a mealtime routine and a specific place to eat worked wonders. Incorporating her preferred foods into balanced meals or forcing her to try new foods? Not so much. This resulted in spending money I didn’t have on food that got wasted.

Throughout the process, I learned that patience, positive reinforcement, and a well-timed joke worked wonders. And when all else failed, McDonald’s was a reliable backup.

Walk a Mile in Our Shoes: Seeking Empathy for Families Facing ARFID

Living with ARFID is like navigating a minefield blindfolded. Judgment and unsolicited advice only add to the challenge. A little empathy goes a long way. Before you suggest “just making her eat,” try understanding the complexities we face daily.

Support isn’t about offering solutions; it’s about listening without judgment. Educate yourself about ARFID, offer a helping hand, or simply be there. Creating an inclusive environment where individuals feel understood and accepted is invaluable. Trust me, after years of raising a kiddo on the spectrum, this kind of acceptance is still hard to find, yet it is so appreciated.

Reflecting on Our ARFID Journey: Lessons Learned and the Road Ahead

Our journey with ARFID has been a mix of tears, laughter, and a lot of McDonald’s takeout. (I can feel you judging me—stop it)! Understanding the disorder empowered me to advocate for my daughter and seek appropriate support. It’s a continuous learning process, but one filled with hope and resilience.

Sharing our story is a step toward building a community of support and understanding. I invite others to share their experiences, ask questions, and foster a compassionate dialogue around ARFID and its impact on families. Let’s navigate this journey together, one bite at a time.