CASE: Kendra is a 4-year-old girl with autism spectrum disorder (ASD) who presents for follow-up of feeding problems to her pediatric clinician. She is an only child in a family where both parents are scientists. Feeding concerns date to infancy, when she was diagnosed with Gastroesophageal Reflux Disease (GERD) associated with persistent bottle refusal and the acceptance of few pureed foods. At 13 months, milk and peanut allergies were diagnosed. Following a feeding clinic evaluation at 24 months, she was prescribed a soy milk supplement and an H2 blocker. There was no concern for oral-motor dysfunction. She was also referred to early intervention for feeding therapy. However, her parents terminated participation after 6 months because she became anxious and had tantrum prior to treatment groups.
She was seen in another feeding program at 3 years; zinc, folate, thyroid, and a celiac panel were normal, and an endoscopy was negative for eosinophilic esophagitis. She began individual feeding therapy, where concerns for rigidity, difficulty transitioning, and limited peer interactions led to a neuropsychological evaluation. Kendra was diagnosed with an ASD and avoidant/restrictive food intake disorder (ARFID). Her cognitive skills were average, and expressive and receptive language skills were low average.
Her diet consisted of French fries, Ritz crackers, pretzels, and 32 ounces of soy formula daily. She had stopped accepting Cheerios and saltines 2 months prior. She controlled other aspects of feeding, insisting on a specific parking spot at a fast food restaurant and drinking from a particular sippy cup. Her parents accepted these demands with concern about her caloric intake, which they tracked daily.
Following diagnosis with ARFID, she resumed feeding therapy using a systematic desensitization approach with rewards. At the first session, she kissed and licked 2 new foods without gagging. Her mother appeared receptive to recommendations that included continuing the “food game” at home, replacing 1 ounce of soy formula by offering water each day, limiting between-meal grazing, and refusing specific feeding demands.
Currently, her parents plan to discontinue feeding therapy with concerns that the treatment was “too harsh.” Her father produces logs of her caloric and micronutrient intake as evidence that she did not replace missed formula with other foods and reports that she subsequently became more difficult to manage behaviorally. Her father now demands to see randomized controlled trials of feeding therapy approaches. Her weight is stable, but she has now limited her pretzel intake to a specific brand. How would you approach her continued care?