TY - JOUR
T1 - Biographical disruption or cohesion?
T2 - How parents deal with their child's autism diagnosis
AU - Rasmussen, Pernille Skovbo
AU - Pedersen, Inge Kryger
AU - Pagsberg, Anne Katrine
PY - 2020/1
Y1 - 2020/1
N2 - Currently, we are witnessing a precipitous rise in autism diagnoses among children, and several bodies of so-ciological research are attempting to explain this development. However, the experiences within parentalcontexts have been inadequately examined; that is, how parents feel about and act upon the awareness of theirchild's autism diagnosis. Drawing upon a qualitative study among Danish parents of 20 children recently di-agnosed with autism, this paper contributes with situated insights into parents' experiences. We identify aspectrum of feelings towards the autism diagnosis, including both relief and grief. In the absence of theoreticalnotions drawing attention to how a child's diagnosis influences parents' self-conceptions and understandings oftheir child, we develop the concept of‘parent-biographical disruption’: the parents' rethinking of themselves andtheir child that might be caused by a chronic condition such as autism. Based on the variety offindings, wediscuss what we call‘parent-biographical cohesion’as a counterpart to‘disruption’.By‘cohesion’we refer to thediagnostic awareness potentially creating clarification for parents about the past, present and future parenting oftheir child instead of disrupting their self-understandings as parents. In this way, through the notion of a par-ental-biographical spectrum of disruption and cohesion, we emphasize the diversity in how parents deal with achild's autism diagnosis and the variety of needs for rethinking parental biographies in the wake of a diagnosis
AB - Currently, we are witnessing a precipitous rise in autism diagnoses among children, and several bodies of so-ciological research are attempting to explain this development. However, the experiences within parentalcontexts have been inadequately examined; that is, how parents feel about and act upon the awareness of theirchild's autism diagnosis. Drawing upon a qualitative study among Danish parents of 20 children recently di-agnosed with autism, this paper contributes with situated insights into parents' experiences. We identify aspectrum of feelings towards the autism diagnosis, including both relief and grief. In the absence of theoreticalnotions drawing attention to how a child's diagnosis influences parents' self-conceptions and understandings oftheir child, we develop the concept of‘parent-biographical disruption’: the parents' rethinking of themselves andtheir child that might be caused by a chronic condition such as autism. Based on the variety offindings, wediscuss what we call‘parent-biographical cohesion’as a counterpart to‘disruption’.By‘cohesion’we refer to thediagnostic awareness potentially creating clarification for parents about the past, present and future parenting oftheir child instead of disrupting their self-understandings as parents. In this way, through the notion of a par-ental-biographical spectrum of disruption and cohesion, we emphasize the diversity in how parents deal with achild's autism diagnosis and the variety of needs for rethinking parental biographies in the wake of a diagnosis
KW - Faculty of Social Sciences
KW - Denmark
KW - Autism spectrum disorders
KW - Children
KW - Biographical disruption
KW - Parental experiences
KW - Sociology of diagnosis
U2 - 10.1016/j.socscimed.2019.112673
DO - 10.1016/j.socscimed.2019.112673
M3 - Journal article
C2 - 31735475
SN - 0277-9536
JO - Social Science & Medicine
JF - Social Science & Medicine
ER -