The costs of caring for a child with an autism spectrum disorder.

Abstract

Background: The primary purpose of this exploratory autism research was to examine the lived experiences of female primary caregivers of children with an autism spectrum disorder (ASD). Methods: Specifically the costs and benefits of the primary caregivers’ experiences were examined through semi-structured one-one-one interviews. The specific focus of this paper was to examine the costs of caring for a child with an ASD, whereby costs did not refer solely to monetary costs, but were related to all aspects of the caregivers’ lives. Interviews were completed with 8 mothers of children that had been formally diagnosed with an ASD. Results: Undoubtedly all family members within the family unit were affected by a child’s diagnosis with ASD as evidenced by the costs revealed by mothers. The subthemes derived from the theme of costs included the following: financial and work costs, costs to the health of family, social costs, and costs to overall family life. The results from this research provide evidence of the challenges associated with caring for a child with an ASD. Conclusions: It is anticipated that the insights provided by these mothers can act as a source of support for others faced with a similar situation. Additionally health care professionals may be able to use the knowledge gained from such qualitative endeavors in order to help parents cope more effectively with their caregiving responsibilities associated with children with ASDs. The mothers within this study are remarkable women that, for the most part, were able to rise above the negatives/costs associated with caring for a child with an ASD and find the silver linings amidst the turmoil. As remarkable as these women are in the daily struggles they face with their children, it is evident that more resources and support are required to assist these women and their families.