Walking in their shoes: exploring the lived experiences of mothers of autistic children

Abstract

There has been a dramatic increase in Autism Spectrum Disorder (ASD) around the globe. A growing body of research has sought to characterize the different presentations of ASD among boys and girls. However, very limited number of Indian studies have focused on mothers of children with ASD. As mothers are the major caregivers of the autistic children, deeper understanding is needed to understand the life experiences of Indian mothers with ASD children. According to the American Psychiatric Association Diagnostic and Statistical Manual, Fifth Revision (DSM-5), the current diagnostic criteria for ASD include deficits in: (a) social interaction and nonverbal communication; and (b) restricted, repetitive movements, behaviours and interests. The lifelong nature of autism has deep implications on parents of children with the disorder, resulting in a wide range of challenges. This is because parents, especially mothers, are generally the primary caregiver of children with autism. Very limited number of Indian studies address the daily challenges faced by mothers of children diagnosed with Autism Spectrum Disorder. The purpose of this research is to gather in-depth information and understanding of mothers who have autistic children. Their perception and difficulties in raising a child with autism and to critically look at areas where future research might need to focus. To conceptualize the recorded experiences; primarily the feminist standpoint epistemology (that focuses on building knowledge and empowerment through women’s lived experience) has been taken into consideration. A pre generated interview questionnaire has been used while conducting the interviews. To analyse the mothers’ narratives, thematic content analysis method has been used. The thematic content analysis of the qualitative data identified five core categories: resources, care load distribution, me time and mental health, autism: subjective understanding of mothers, blame and mothering. The results of this study offer valuable insight into the lived experiences of mothers of children with autism and need for further course of action to empower them.