IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v301y2022ics0277953622002805.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953622002805
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2022.114974?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. 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).
    2. 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.
    3. Turowetz, Jason, 2015. "Citing conduct, individualizing symptoms: Accomplishing autism diagnosis in clinical case conferences," Social Science & Medicine, Elsevier, vol. 142(C), pages 214-222.
    4. 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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Decoteau, Claire Laurier, 2017. "The “Western disease”: Autism and Somali parents' embodied health movements," Social Science & Medicine, Elsevier, vol. 177(C), pages 169-176.
    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. Aronson, Brian, 2016. "Peer influence as a potential magnifier of ADHD diagnosis," Social Science & Medicine, Elsevier, vol. 168(C), pages 111-119.
    4. 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).
    5. 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).
    6. Béhague, Dominique P., 2015. "Taking pills for developmental ails in Southern Brazil: The biologization of adolescence?," Social Science & Medicine, Elsevier, vol. 143(C), pages 320-328.
    7. Ekaterina A. Orel & Alena A. Kulikova, 2016. "Children with Behavioral Problems in the First Grade of Russian School: Similarities and Differences," HSE Working papers WP BRP 66/PSY/2016, National Research University Higher School of Economics.
    8. Hayes, Jennie & McCabe, Rose & Ford, Tamsin & Parker, Daisy & Russell, Ginny, 2021. "‘Not at the diagnosis point’: Dealing with contradiction in autism assessment teams," Social Science & Medicine, Elsevier, vol. 268(C).
    9. Pawson, Mark & Kelly, Brian C., 2022. "Balancing consumption and constraint: Binge drinking, stimulant misuse, and relational capital among young adults," Social Science & Medicine, Elsevier, vol. 309(C).
    10. Bröer, Christian & Agyekum, Humphrey Asamoah, 2021. "Medicalization and manhood: Is an ADHD diagnosis emerging for allegedly troublesome boys in Accra, Ghana?," Social Science & Medicine, Elsevier, vol. 291(C).
    11. Samir Al-Adawi & Aishwarya Ganesh & Lara Al-Harthi & Muna Al-Saadoon & Nasser Sibani & Ajitha Eswaramangalam, 2023. "Epidemiological and Psychosocial Correlates of Cognitive, Emotional, and Social Deficits among Children and Adolescents in Oman: A Literature Review," Child Indicators Research, Springer;The International Society of Child Indicators (ISCI), vol. 16(2), pages 689-716, April.
    12. Slagboom, M. Nienke & Bröer, Christian & Berg, Jonathan, 2021. "Negotiating ADHD: Pragmatic medicalization and creolization in urban India," Social Science & Medicine, Elsevier, vol. 289(C).

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:301:y:2022:i:c:s0277953622002805. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.