A unique new resource at Holland Bloorview aims to bring education, awareness and understanding to the complex nature of feeding challenges in autistic children.
Three-quarters of autistic children have such challenges, which can be a chronic source of stress and worry for families. ASD Feed-Ed, an online tool co-developed by researchers and families, helps parents and caregivers recognize the specific factors causing these issues, implement new strategies, and better advocate for support with their doctors. (Note: Many autistic self-advocates prefer to use identity-first language rather than people-first language in describing themselves. With this in mind, we are consciously choosing identity-first language for the purpose of describing and reporting on this study and project).
“We cover a variety of topics related to feeding and answer questions that we frequently hear from caregivers and families,” says Rebecca Perlin, a speech-language pathologist who helped produce ASD Feed-Ed. “It’s a trusted source of up-to-date information based on research and vetted by clinicians.”
Feeding challenges can cause serious issues for children and their families, ranging from nutritional deficiencies, constipation and obesity to behaviour concerns, parental stress, and even isolation.
“It’s concerning not just from a nutrition standpoint but from a social one too, because food is so central to our ability to interact with others,” says Dr. Sharon Smile, clinical study investigator at Holland Bloorview. “Then, when parents are unable to help, they feel deep levels of stress and guilt.”
Maritza Basaran is a family leader at Holland Bloorview whose young son Harrison has ASD-related feeding challenges. She says her family felt stuck for many years not knowing how to help him.
“Meal times were so stressful for our whole family, with constant worry about my son not getting the nutrition he needed,” she said.
Maritza and Harrison are frequent collaborators to Holland Bloorview research and joined one important project that helped spark the new resource.