“It’s not a user-friendly system”: Mothers’ realities of raising children with Autism Spectrum Disorders

Abstract

Background: Mothers of autistic children experience the stressors of parenting, as well as the effects of caregiving for disabled individuals. One in 66 children is diagnosed with ASD in Canada, but there is no known cause of the disorder. While research has explored the many effects of ASD and potential therapies and treatments, less is known about the lived experiences of the primary caregivers who support autistic children. This study sought to explore the experiences of mothers raising their biological children diagnosed with ASD in southwestern Ontario. Methods:Eleven mothers participated in one-on-one semi-structured interviews to discuss their children, their children's needs, and the effects of caregiving for families.Results: Four themes emerged through thematic analysis: Figuring it out, Do your own research, We fall in a gap, and What about the family? The themes each have three subthemes further describing the mothers' experiences. Overall, many concerns existed for mothers raising autistic children that change over time (e.g., noticing the first symptoms, getting a diagnosis, searching for resources, and long-term coping). Conclusions:Mothers who raise autistic children are in dire need of support as they care for their growing children and maintain their own wellbeing. Suggestions have been provided as to how this support may be most effectively provided to families.