The impact of feeding difficulties on participation in everyday life activities for a child on the autism spectrum and their families - A qualitative study

Abstract

Introduction While up to 89% of children on the autism spectrum experience feeding differences, little is known about the impact of these differences on children and their families' participation in life activities. This study aimed to understand the impact of feeding differences on participation in everyday life activities for families. Material and Methods Participants were 80 children (5-12 years) with a formal diagnosis of Autism Spectrum Disorder (ASD) and their caregivers. Caregivers completed an online survey including 8 open-ended questions exploring how their children participated in mealtimes at home, in the community, during family events, celebrations, on holidays, and at school; as well as cultural influences on mealtimes. Reflexive thematic analysis (Braun & Clark, 2006) was used to identify themes within the data. Results Three main themes were identified; the first theme described the children's mealtime challenges at home including difficulties sitting for meals and refusal of non-preferred family foods. The second theme explored children's mealtime challenges across environments at school, holidays, and special occasions. These included difficulties with accessibility of preferred foods at school canteens and restaurants, thereby limiting the children's participation in community settings. The final theme captured the families' challenges in participating at family events including missing out on holidays. Caregivers reported feelings of failure, stress and judgement from extended family, friends, school, and society because of their children's feeding differences. Discussion/Conclusion Preliminary findings highlighted some participation challenges experienced by autistic children, and their families, and illustrates the need for families to have access to participation-focused supports where they desire them.