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Deserving but not entitled: The social construction of autism spectrum disorder in federal policy

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  • Chiri, Giuseppina
  • Bergey, Meredith
  • Mackie, Thomas I.

Abstract

Public policies play an influential role in shaping public opinion about health conditions, who is affected by them, and potential pathways for identification and intervention. This study draws upon a social constructionist perspective of policy design and disability to examine how autism spectrum disorder (ASD) has been framed in United States federal legislation. Qualitative content analysis of autism legislation passed between 1973 and 2019 indicates that policies reinforced ASD as a largely medicalized, neurobiological condition of childhood; this was reflected in both the policy aims, sources of knowledge and groups prioritized to address ASD; and the symbolic or material resources committed (or not committed) by enacted federal legislation to specific constituencies. Policy aims of early ASD legislation were symbolic in nature, focusing predominantly on framing children with ASD as a group worthy of public recognition. More recent legislation, in contrast, conferred material resources – albeit in targeted ways. Funding for surveillance and medical research on causation, early detection, treatment, and health professional training were prioritized with little attention to either service delivery needs of individuals with ASD and their families, supports over the lifecourse, or the social factors influencing ASD.

Suggested Citation

  • 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).
    • Handle: RePEc:eee:socmed:v:301:y:2022:i:c:s0277953622002805
    DOI: 10.1016/j.socscimed.2022.114974
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    References listed on IDEAS

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    1. Mazumdar, Soumya & Winter, Alix & Liu, Ka-Yuet & Bearman, Peter, 2013. "Spatial clusters of autism births and diagnoses point to contextual drivers of increased prevalence," Social Science & Medicine, Elsevier, vol. 95(C), pages 87-96.
    2. 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).
    3. Conrad, Peter & Bergey, Meredith R., 2014. "The impending globalization of ADHD: Notes on the expansion and growth of a medicalized disorder," Social Science & Medicine, Elsevier, vol. 122(C), pages 31-43.
    4. Turowetz, Jason, 2015. "Citing conduct, individualizing symptoms: Accomplishing autism diagnosis in clinical case conferences," Social Science & Medicine, Elsevier, vol. 142(C), pages 214-222.
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