Ryan’s ARFID Story – Eating Disorder Awareness Week

Ryan’s ARFID Story 

Written by IDEA committee member and Grandview Kids parent, Abby V.

Eating Disorder Awareness Week (EDAW) occurs from February 1 to 7 annually across Canada. This week is dedicated to raising awareness and developing understanding about eating disorders and how it impacts people’s lives. Eating disorders come in various forms, each with its unique set of challenges and symptoms. In Canada, an estimated 2.7 million people are impacted with approximately 1.4 million of these being youth. Common eating disorders are Anorexia Nervosa (AN), Bulimia Nervosa (BN), Binge Eating Disorder (BED) and Avoidance Restrictive Food Intake Disorder (ARFID). 

Ryan is a sweet, curious and intelligent eight-year-old boy who lives with his doting parents, Ali and Dima, and their beloved cat, Goldie. He loves spending time outdoors in nature collecting leaves, catching bugs, fishing at his family’s cottage and playing at the beach during family vacations. His curiosity is seen through the endless questions he will ask his parents about topics of interest, including numerous studies of science such as physics, space and animals (reptiles and ocean creatures).  

When Ryan’s mom, Dima, was pregnant with Ryan, she was referred to Ontario’s free Healthy Baby Healthy Children program that provided her with a nurse to help guide her through pregnancy and provide postpartum support due to her lack of family in Canada. A few months after his birth, he began to exhibit some alarming signs of concern which included how the way he would play (spinning everything), lightly hitting his head on wall and babbling that ceased at six months. The biggest alert was his refusal to eat solid food.  

Soon after, Ryan’s paediatrician referred him to Grandview Kids. “We were lucky to meet our Grandview Kids doctor after a short waitlist of five months. Ryan was only 18 months old. We feel very fortunate to receive an early diagnosis of mild autism spectrum disorder (ASD) six months later which allowed us to provide early intervention,” recalls Dima. His refusal to eat was still a huge challenge and Dima knew it was not just “picky eating” due to his ASD. She connected with other specialists and parents in the community, which led her to discover Avoidance Restrictive Food Intake Disorder (ARFID).  

Ryan was referred to Holland Bloorview Rehabilitation Hospital to participate in the first ever ARFID study for kids in Ontario and Ryan received an official ARFID diagnosis. As there is a lack of information and programs offered for ARFID for kids under the age of 18, this study was promising but unfortunately did not continue for long. Dima and Ali continued to provide Ryan with unwavering support. At Grandview Kids he accessed services in Speech-Language Pathology, Occupational Therapy (OT), Therapeutic Recreation Therapy and went on to private OT and a food explorer therapy program. While the interventions certainly helped Ryan in many areas affected by his ASD, he was still not eating any solid food. They considered applying for costly programs offered in the US, even going as far as communicating with the Ontario Ministry of Health in hopes of securing funding as these vital programs are not offered in Canada. 

Ryan’s turning point was during the Summer of 2024 when his Grandview Kids’ paediatrician suggested the use of an antidepressant medication to curb his anxiety around food. “When he looks at a plate of food, he doesn’t see food. Instead, he sees something scary like spiders. Ryan used to cry when he would see me with a plate of food and would take me to my bedroom thinking he was keeping me safe,” says Dima. At 7.5 years of age, Ryan was finally able to consume solid food for the first time in his life. With the help of his amazing Grandview Kids team consisting of his paediatrician, nurse, and nutritionist who meet monthly to adjust the medication dosage to suit Ryan’s needs, “he is less anxious around food, more willing to play with it and comfortable to try and put it in his mouth.”  

Eating remains a challenge as he will still only eat five food items, often gaining one type only to drop another. Dima shares how “it was stigmatizing for Ryan to drink milk from a bottle at school.” However, she beams with pride and joy because he is now chewing and swallowing food, new skills that he had to learn, and he can go to school with a lunchbox like his peers. His success has really driven his parents to shift their perspective. “Once I stopped comparing him to others, and began comparing him to old versions of himself, I could see the progress. I tell him to be proud of himself. His teacher said he has high self-esteem because of his supportive, loving parents.”