Exploring the Lives of Mothers Raising Children with Autism Spectrum Disorder in Japan

Abstract

Background: Examining the lives that mothers experience and build will allow us to deepen our understanding of children with ASD and their mothers and facilitate developing support methods. The study aimed to examine the lives of mothers raising children with autism spectrum disorder (ASD) and investigate their sources of support. Method: We conducted a qualitative inductive study using semi-structured interviews to identify characteristics of the lives that mothers have created. Results: Semi-structured interviews were conducted with 11 mothers having children with ASD. The analysis comprised three stages of coding and yielded eight categories. The lives of these mothers contained three themes: preoccupation with parenting children with ASD and their siblings; evolving mother; and using social resources. Mothers engaged in “assessing the characteristics, growth, and changes in the child with ASD”, had a “preoccupation with parenting children with ASD”, and were “thinking about the future of the child with ASD”, and “having goals and plans for parenting” while having “consideration toward the child’s siblings”. During this process, mothers experienced “changes in perspective or approach” and created lifestyles while “receiving help from people around them” and engaged in the “use of social resources”. Conclusions: To avoid becoming preoccupied with parenting and being burdened by their lifestyle, mothers require social support to monitor their perceptions. Furthermore, the utilization of social resources requires the supporting individuals to understand the characteristics of children with ASD, provide appropriate information, and assist in decision-making.