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Biographical disruption or cohesion?: How parents deal with their child's autism diagnosis

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  • Rasmussen, Pernille Skovbo
  • Pedersen, Inge Kryger
  • Pagsberg, Anne Katrine

Abstract

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.

Suggested Citation

  • Rasmussen, Pernille Skovbo & Pedersen, Inge Kryger & Pagsberg, Anne Katrine, 2020. "Biographical disruption or cohesion?: How parents deal with their child's autism diagnosis," Social Science & Medicine, Elsevier, vol. 244(C).
  • Handle: RePEc:eee:socmed:v:244:y:2020:i:c:s0277953619306689
    DOI: 10.1016/j.socscimed.2019.112673
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    References listed on IDEAS

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    1. Tan, Catherine D., 2018. "“I'm a normal autistic person, not an abnormal neurotypical”: Autism Spectrum Disorder diagnosis as biographical illumination," Social Science & Medicine, Elsevier, vol. 197(C), pages 161-167.
    2. Valentine, Kylie, 2010. "A consideration of medicalisation: Choice, engagement and other responsibilities of parents of children with autism spectrum disorder," Social Science & Medicine, Elsevier, vol. 71(5), pages 950-957, September.
    3. Hollin, Gregory J.S. & Pilnick, Alison, 2015. "Infancy, autism, and the emergence of a socially disordered body," Social Science & Medicine, Elsevier, vol. 143(C), pages 279-286.
    4. Hodgetts, Sandra & Nicholas, David & Zwaigenbaum, Lonnie & McConnell, David, 2013. "Parents' and professionals' perceptions of family-centered care for children with autism spectrum disorder across service sectors," Social Science & Medicine, Elsevier, vol. 96(C), pages 138-146.
    5. Daley, Tamara C., 2004. "From symptom recognition to diagnosis: children with autism in urban India," Social Science & Medicine, Elsevier, vol. 58(7), pages 1323-1335, April.
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    7. Turowetz, Jason, 2015. "Citing conduct, individualizing symptoms: Accomplishing autism diagnosis in clinical case conferences," Social Science & Medicine, Elsevier, vol. 142(C), pages 214-222.
    8. Brown, Phil & Lyson, Mercedes & Jenkins, Tania, 2011. "From diagnosis to social diagnosis," Social Science & Medicine, Elsevier, vol. 73(6), pages 939-943, September.
    9. Jutel, Annemarie & Nettleton, Sarah, 2011. "Towards a sociology of diagnosis: Reflections and opportunities," Social Science & Medicine, Elsevier, vol. 73(6), pages 793-800, September.
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    Cited by:

    1. Juel, A. & Erlangsen, A. & Berring, L.L. & Larsen, E.R. & Buus, N., 2023. "Re-constructing parental identity after parents face their offspring's suicidal behaviour: An interview study," Social Science & Medicine, Elsevier, vol. 321(C).
    2. Chiri, Giuseppina & Bergey, Meredith & Mackie, Thomas I., 2022. "Deserving but not entitled: The social construction of autism spectrum disorder in federal policy," Social Science & Medicine, Elsevier, vol. 301(C).
    3. Fried, Talia & Plotkin-Amrami, Galia, 2023. "Not all diagnoses are created equal: Mothers’ narratives of children, ADHD, and comorbid diagnoses," Social Science & Medicine, Elsevier, vol. 323(C).

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