The reconstructed self: understanding the private and public identity of a mother of a child with autism

Abstract

The puzzle pattern of the autism awareness ribbon signifies the mystery of life on the spectrum. The spectrum is characterized by the wide range of possible diagnoses of autism. One family out of every 68 is affected by autism. Each shape and color of the puzzle illustrates the diversity of experience for each family and person living with autism. Therefore, the people living the everyday life of autism provide an insightful understanding of how the puzzle pieces fit together. The central focus of this research was the lived experience of the interviewees. Nine mothers of children diagnosed with autism were interviewed. Five themes emerged once the interviews were conducted: (a) public scrutiny, (b) family and friend responses, (c) mother versus society, (d) guilt and stress, and (e) advocacy and networking. Each of these themes represents the stories of mothers who live with children on the spectrum. Each story shared provides the reader with a deeper understanding of mothers' experiences who live with children on the spectrum.