Background: Autism spectrum disorder (ASD) is a complex neurodevelopmental condition affecting 1% of children. 60-90% of children with ASD experience feeding problems such as extremely fussy eating.
Aim: To examine the experiences of parents of children with ASD who have eating problems; the support they have received; and the additional support they would like.
Methods: A pragmatic qualitative research approach with an element of participatory photography was adopted. Six participants were recruited using purposive and snowball sampling. All were mothers in their 40s who lived in Lewisham. Data was collected via semi-structured interviews and all participants additionally submitted photographs with captions that illustrated their child’s eating problems and the effect on them and their family. Interviews were transcribed, and the transcripts, photos and captions analysed using inductive thematic analysis. Rigour was ensured via member checking, peer review of themes and reflexive journaling.
Results: Themes showed that parents and children found ‘mealtimes difficult’ and they were ‘unsure when or whether to pursue help’. Parents reported ‘lowered expectations of parents and professionals’ regarding their child’s eating problems, and ‘the challenge of finding support’. Parents expressed their desire for ‘services that are easily accessible and supportive’.
Discussion: This research has provided the first UK exploration of parental experience of feeding problems in children with ASD. It supports findings from studies in North America and Australia that these problems have a negative impact on the child, parent and family wellbeing. It has been the first study to explore the services used and desired in the NHS.
Conclusion: In-depth exploration of the experiences of six parents of children with ASD and feeding problems has been carried out. The study findings will be used to better plan services with the overriding aim of improving the wellbeing of children with ASD their families in Lewisham.