Difficult Situations Experienced by Mothers of Children with Autism Spectrum Disorder from Time of Noticing Disorder until Proper Diagnosis

Abstract

Purpose: With a focus on mothers who raised children who had not been diagnosed with autism spectrum disorder, this study aims to identify the struggles and challenges experienced by these mothers in their daily lives, ranging from the time they noticed their children’s disorder until proper diagnosis.

Method: Semi-structured interviews were conducted with ten mothers whose children were aged 1–6 years and had not been diagnosed with autism spectrum disorder. The obtained data were then qualitatively and descriptively analyzed.

Results: Struggles experienced by the mothers were classified into ten categories, including “continuing to interact with their children while being influenced by children’s behaviors predicated by the developmental disorder,” “physical and mental exhaustion from the lack of relaxation and free time,” “experiencing difficult times and unenjoyable parenting because of not knowing what to do and being unsuccessful after struggles,” and “living a life that differs from the mother’s prior expectation because of having to deal with their child all day.”

Discussion: The mothers experienced difficulties that arose in dealing with their children’s needs all day long. They repeatedly felt anxious and not understood by those around them and consciously isolated themselves. These results suggest that there is a need to provide continuous support to mothers of children with autism spectrum disorder in a sympathetic manner.