Abstract
The major aim of this study was to determine how children diagnosed with autism shapes their parents’ lives by specifying parents’ life stories. The study group consisted of 10 parents who have children with autism. Parents who have participated in the study were determined through a preliminary interview prior to the study and in-depth interviews were conducted with volunteer parents. In the study, "Life Story Interview" list was implemented to examine the content of life stories that shape parents’ lives. The data obtained from the research were analyzed using data analysis phases of interpretative phenomenology which is one of the qualitative research models. By analyzing the data obtained in the research, 10 major themes emerged. These major themes include; diagnosis, feeling, hopes and plans, concerns and questions, social reactions / stigmatization, parenting roles, coping with, sensitivity to disease, meaning of life and development. Analyses revealed that parents with autistic children undergo through a wide variety of emotions, challenges and difficulties during their daily lives and also that good coping skill is the key to normal functioning within the family which had an autistic child.
Highlights
Autism Spectrum Disorder (ASD) is a broad term that covers social-communicative deficits, repetitive interests, and behaviors (DSM-5, 2014)
There is an experience among people with the phenomenon (Miller, 2003)
In order to define and interpret experiences, the focus is on the implications of written out experiences, and on the description of phenomenon through perceptions of participants (Motherlls, 2006)
Summary
Autism Spectrum Disorder (ASD) is a broad term that covers social-communicative deficits (e.g., deficits in social-emotional interaction, non-verbal communication, building and maintaining relationships), repetitive interests, and behaviors (e.g., stereotyped and repetitive motor movements, sameness, ritualistic, restricted and deep interest, more or less sensory stimulation) (DSM-5, 2014). Many families experience emotional strains, lack of information about the child's condition, health problems due to the child‟s disability, necessity to consult many specialists about treatment and education, difficulties in describing the situation of child to the others and concerns about the future of child (Küçüker, 1997; Neely-Barnes, Hall, Roberts & Graff, 2011). Families are faced with a burden and long-term crisis that exceed their adaptation capacities because of more time, energy, and money requirements (Küçüker, 1997; Neely-Barnes, Hall, Roberts & Graff, 2011). These families have stresses and these stresses spread through various dimensions of family life. Families of children with autism often experience certain challenges such as anxiety, depression and low self-esteem, communication problems within the family that can lead separation or divorce and social isolation feelings (Shapiro, Blacher, & Lopez, 1998; Pelchat, Jocelyn & Nicole, 1999; Manuel, Michelle, Rajesh & Beth, 2003)
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