I’m thrilled to have occupational therapist and Feeding Matters’ Director of Strategic Initiatives, Cuyler Romeo, joining me on the podcast. In this episode, we’re diving deep into a complex and often misunderstood topic: feeding disorders, specifically Avoidant/Restrictive Food Intake Disorder (ARFID), and their connection to autism. Cuyler brings her expertise in pediatric feeding and sensory issues, and together we share insights, real-life examples, and actionable tips for parents and professionals facing these unique challenges. Whether you’re navigating extreme picky eating with your child or clients or simply want to understand more about feeding difficulties in autism, this conversation is full of valuable guidance.
ARFID, or Avoidant/Restrictive Food Intake Disorder, goes beyond typical picky eating. It’s a feeding disorder found in the DSM-5 and is characterized by severe restriction or avoidance of certain foods, often leading to malnutrition or dependency on supplements.
For many children with autism, sensory sensitivities, anxiety around food, and a need for consistency in textures or brands can make eating an overwhelming experience. Studies show that children with autism are five times more likely to experience severe feeding problems than their neurotypical peers. Estimates suggest that 12.5% to 33.3% of individuals with ARFID also have autism, with common symptoms including heightened sensory sensitivities and rigid eating patterns.
This overlap of sensory and psychological needs makes understanding ARFID in the context of autism especially important. Early identification and intervention can help address these unique challenges, offering children the best chance for healthy growth and improved mealtime experiences.
Before we get into the specifics of ARFID, let’s clarify what this disorder entails. Unlike typical picky eating, ARFID is a serious eating disorder with symptoms that go far beyond simply refusing certain foods. This disorder, recognized in the DSM-5, includes food avoidance or restriction that can lead to malnutrition, dependence on supplements, or even medical complications. For children with autism, the overlap is profound, and the need for understanding is essential.
Like many of you, I’ve faced the stress of trying to navigate extreme feeding challenges with my own child, Lucas. He was an extremely picky eater, and his limited food intake led to failure to thrive. Getting to the bottom of his issues required a multi-disciplinary approach that went beyond simple “tricks” for picky eating.
One significant point Cuyler highlighted is the distinction between pediatric feeding disorders (PFDs) and ARFID. PFDs are medical diagnoses with insurance codes and typically involve dysfunction in one or more areas such as medical, nutritional, feeding skills, or psychosocial aspects. Kids with autism who present with extreme feeding issues often fall under PFD, though ARFID can sometimes come into play too.
Cuyler shared that ARFID is a disorder that exists along a psychological and nutritional domain, where severe food restriction leads to nutritional deficiency. This brings us to a critical overlap in the needs of autistic children who struggle with food intake and sensory processing.
For parents and caregivers facing these challenges, I can’t stress enough the value of resources like Feeding Matters, an organization dedicated to changing the system of care for children with eating and feeding difficulties.
Feeding Matters offers a free online screening tool, the Infant and Child Feeding Questionnaire, which can be a fantastic place to start.
When you’re dealing with these issues, it’s easy to feel alone. But rest assured, you don’t have to face this alone. Here are some steps our guest and I recommend:
Get an Evaluation: Start with a professional evaluation. An assessment will help you determine whether your child has a feeding disorder and identify which areas need the most focus.
Use Screening Tools: Feeding Matters provides a free online questionnaire that can help you get the conversation going with your child’s pediatrician. If your child is older, my own BECA (Barbera Early Childhood Assessment) tool can also be helpful, and it’s free.
Consider a Three-Day Food Diary: Tracking your child’s intake can reveal more than you might realize. When I started logging my son’s eating habits, I quickly saw the gaps in his nutrition, which eventually helped us justify getting specialized help. You can also learn how to make an easy, medium, and hard food list within my newest book, Turn Autism Around.
Build a Multidisciplinary Team: Many feeding challenges, especially when combined with autism, require a team approach. Pediatric feeding programs often involve dietitians, occupational therapists, speech-language pathologists, and, in some cases, psychologists. Not everyone has access to a feeding clinic, so you might have to look locally for professionals specializing in feeding. Look through this Feeding Matters professionals guide
In my book Turn Autism Around, Chapter 10 is dedicated to strategies for feeding issues. Here are some of the tips that have helped my clients:
Gradual Exposure: Start by introducing small, non-threatening changes. Instead of forcing a new food, try placing it near the plate, letting your child observe and become familiar with it over time. Making an easy, medium, hard food lists and pairing meal time with positive easy foods is a good first step.
Structured Meals: Stick to a routine where meals occur at set times, and avoid grazing. This means no wandering with food or drinks that have calories. When mealtimes are predictable, children are more likely to try new foods.
Positive Reinforcement: Praise small efforts and take a no-pressure approach. It’s essential to avoid turning meals into a battleground.
Cuyler reminded me of an essential point—progress over perfection. I’ve seen families struggle because they felt every meal had to be “perfect.” But remember, celebrating small wins is essential. For some families, simply having a calm, tear-free meal can be a huge victory.
In my family, Lucas eventually developed food preferences that include chicken and fries, and honestly, that’s okay. He’s grown to love eating out, and those moments are filled with joy. Feeding challenges can be stressful, but moments of joy and connection are also part of the journey
One area where families may need additional guidance is determining whether ARFID could be a factor. Unlike PFD, ARFID has specific diagnostic criteria in the DSM-5. If your child avoids or restricts food to the point of significant malnutrition, reliance on supplements, or severe anxiety about food, this may indicate ARFID.
ARFID cases often overlap with autism, but a clear diagnosis can help guide treatment. This can involve a more psychological approach, where anxiety about food is addressed in addition to sensory and skill-based interventions.
Thank you for joining me today, and a huge thank you to our guest Cuyler Romeo, OT from Feeding Matters for sharing such valuable insights. For those of you ready to take the next steps, here’s a quick list of resources:
Occupational Therapist and Pediatric Feeding Specialist Cuyler Romeo’s extensive leadership and clinical experience are instrumental in the execution and management of Feeding Matters’ strategic initiatives. In partnership with the CEO, Jaclyn Pederson, Cuyler collaborates with constituents to identify, track, and assess innovative approaches to the PFD system of care. Cuyler also facilitates strategic partnerships with select professional associations including the American Occupational Therapy Association (AOTA). Prior to joining Feeding Matters, Cuyler served as a founding partner of Mealtime Connections, LLC, and gained valuable insight on funding trends and industry implications as the director of clinical innovations at Therapy 2000. She is currently a treating clinician in Banner-University Medical Center’s NICU and works to advance the feeding skill domain by facilitating AOTA’s mealtime Occupations: Feeding, Eating, and Swallowing Community of Practice.
ARFID, or Avoidant/Restrictive Food Intake Disorder, is a feeding disorder characterized by severe food restriction that goes beyond regular picky eating. It’s often linked to nutritional deficiencies and anxiety around food, making it a medical condition in the DSM-5, unlike typical picky eating that generally improves over time.
Many children with autism experience feeding challenges due to sensory processing issues, rigid preferences, and aversions, which can escalate into a PFD or even ARFID. While both can coexist with autism, they differ slightly: PFD is a broader medical diagnosis encompassing challenges across domains like nutrition, motor skills, and psychosocial factors, whereas ARFID is more focused on psychological and nutritional concerns.
Look for signs such as severe food restriction, reliance on specific brands or textures, noticeable weight loss, or reliance on nutritional supplements. If mealtimes become highly stressful or your child shows rigid food rules, like refusing food that doesn’t “look right,” it’s worth consulting with a pediatrician or feeding specialist.
Feeding Matters offers a free online screening tool called the Infant and Child Feeding Questionnaire to help parents evaluate feeding concerns and open up conversations with their pediatricians. Dr. Mary Barbera also provides a BECA digital assessment that covers feeding and other developmental areas for autism. Both tools are great starting points.
Gradual exposure, structured mealtimes, and positive reinforcement can all help children become more comfortable with new foods. Dr. Barbera also suggests trying a three-day food diary to better understand your child’s intake and patterns. Remember, progress over perfection is key, and professional guidance can make a big difference if challenges persist.
Resources
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