Objectives: The purpose of this phenomenological study was to explore the lived experience of families living with a child with autism. The objective was to describe how sensory related behaviors in children with autism impact family routines and roles in order to better inform future treatments for both children and families.
Methods: A phenomenological qualitative design was used to explore the lived experience of four caregivers of children with autism. Purposive and snowball sampling were used to obtain primary caregivers of children with autism between the ages of 7 and 12 years of age. Following informed consent, participants were interviewed and tape recorded describing their experiences performing daily routines. Analysis of the transcripts followed van Manen’s (1990) procedures. In order to ensure validity of the study, triangulation, member checking and an audit trail were used during data analysis.
Results: Several themes arose from the data, including the need for flexibility, performance differences in familiar space vs. unfamiliar space, difficulty completing family activities together, the impact of autism on siblings, the need for constant monitoring of the child with autism, and the importance of developing strategies to improve participation for the family as a whole. Although sensory related behaviors are not the only factor that influences family routines and participation in activities, the data from this study suggests that it is an important consideration when evaluating the child and family’s health and well-being. The results indicate that families plan their participation in activities around the child with autism, but attempt to be flexible in how they accomplish their own family’s goals. Environments and routines were changed to meet the child’s sensory needs.
Conclusions: The findings of this study highlight the importance of consideration of the family routines, activities and coping strategies, as well as the child’s sensory difficulties when working with families and children affected by autism. Findings also identify specific areas that may be problematic for families and which should be included when planning interventions. Interventions should include a discussion of potential strategies for improving family participation and managing the child’s sensory-related behaviors to improve participation in home and community activities.