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

Y1 - 2020

N2 - Currently, we are witnessing a precipitous rise in autism diagnoses among children, and several bodies of sociological research are attempting to explain this development. However, the experiences within parental contexts have been inadequately examined; that is, how parents feel about and act upon the awareness of their child's autism diagnosis. Drawing upon a qualitative study among Danish parents of 20 children recently diagnosed with autism, this paper contributes with situated insights into parents' experiences. We identify a spectrum of feelings towards the autism diagnosis, including both relief and grief. In the absence of theoretical notions drawing attention to how a child's diagnosis influences parents' self-conceptions and understandings of their child, we develop the concept of ‘parent-biographical disruption’: the parents' rethinking of themselves and their child that might be caused by a chronic condition such as autism. Based on the variety of findings, we discuss what we call ‘parent-biographical cohesion’ as a counterpart to ‘disruption’. By ‘cohesion’ we refer to the diagnostic awareness potentially creating clarification for parents about the past, present and future parenting of their child instead of disrupting their self-understandings as parents. In this way, through the notion of a parental-biographical spectrum of disruption and cohesion, we emphasize the diversity in how parents deal with a child'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 sociological research are attempting to explain this development. However, the experiences within parental contexts have been inadequately examined; that is, how parents feel about and act upon the awareness of their child's autism diagnosis. Drawing upon a qualitative study among Danish parents of 20 children recently diagnosed with autism, this paper contributes with situated insights into parents' experiences. We identify a spectrum of feelings towards the autism diagnosis, including both relief and grief. In the absence of theoretical notions drawing attention to how a child's diagnosis influences parents' self-conceptions and understandings of their child, we develop the concept of ‘parent-biographical disruption’: the parents' rethinking of themselves and their child that might be caused by a chronic condition such as autism. Based on the variety of findings, we discuss what we call ‘parent-biographical cohesion’ as a counterpart to ‘disruption’. By ‘cohesion’ we refer to the diagnostic awareness potentially creating clarification for parents about the past, present and future parenting of their child instead of disrupting their self-understandings as parents. In this way, through the notion of a parental-biographical spectrum of disruption and cohesion, we emphasize the diversity in how parents deal with a child'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

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

VL - 244

JO - Social Science & Medicine

JF - Social Science & Medicine

SN - 0277-9536

IS - 112673

ER -