Caregiver perspectives regarding the impact of feeding difficulties on mealtime participation for primary school-aged autistic children and their families

Abstract

Purpose: Although up to 89% of autistic children experience feeding difficulties, little is known about the impact of these difficulties on mealtime participation. The aim of this study was to explore the impact of feeding difficulties on the mealtime participation of autistic children and their families based on caregiver experiences. Method: Participants were 78 caregivers who completed online surveys for 80 children (5–12 years) with a formal diagnosis of Autism Spectrum Disorder (ASD). The online survey contained eight open-ended questions exploring how children participated in mealtimes at home, in the community, at celebrations, on holidays, and at school; as well as exploring cultural influences on mealtimes. Result: Using thematic analysis, three themes were identified: 1) Participation at home, emphasised the individualised nature of experiences and impacts for children and families, while 2) participation in the community, highlighted the range of contexts in which children and families experience challenges. 3) Influence and experience, accounted for cultural and social factors that mediated the child and family’s impacts and experience, including a lack of understanding in the community. Conclusion: The findings highlight that autistic children with feeding difficulties and their families may experience a range of mealtime participation challenges. Caregivers also reported feelings of failure, stress, and judgement; some of which stemmed from interactions with extended family, friends, school, and society which increased their difficulties when navigating mealtime participation. Addressing the challenges requires a strengths-based approach including creating inclusive and accessible community environments that accommodate diverse feeding preferences and support the well-being of neurodivergent children and their families.