Let down by Low Expectations: A Qualitative Interview/participatory Photography Study of Feeding Problems in Autistic Children

Abstract

ABSTRACT Feeding problems are common in autistic children. They include eating a limited repertoire of foods and often impact on health and quality of life. To examine the experiences of parents of autistic children who have feeding problems, and their service needs. A pragmatic, qualitative research approach was adopted. Six participants were recruited using purposive and snowball sampling. Data was collected via semi-structured interviews. Participants also submitted photographs with captions. These illustrated their child’s feeding problems and the effect on them and their family. Interviews were transcribed. They were analyzed alongside the photos and captions using inductive thematic analysis. Rigor was ensured via member checking, peer review of themes, and reflexive journaling. Five themes emerged. Parents and children found ‘mealtimes difficult.’ Parents were ‘unsure when or whether to pursue help.’ They felt ‘let down by a lack of support.’ ‘Lowered expectations of parents and professionals’ prevailed about their child’s feeding problems. Parents desired ‘services that are easily accessible and supportive.’ This is the first qualitative study of parents’ experiences of feeding problems in autistic children in the UK. It has been the first study to incorporate participatory photography. These problems have a negative impact on the child’s learning and the child’s, and family’s wellbeing. Support needs are largely unmet. This study has provided rich insight into autistic children’s feeding problems. The findings will inform the design of better support for autistic children and their families.