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“We were on our own”: Mothers' experiences navigating the fragmented system of professional care for autism

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  • Brewer, Alexandra

Abstract

Autism is a developmental disorder that emerges in early childhood. Treatments for autism span a wide variety of professionals and paraprofessionals in the medical and educational realms. This article draws on data from a survey of 620 parents of autistic children, including 385 written narratives, to examine the experiences of mothers as they engage with this fragmented system of professional care for children with autism. Findings suggest that engagement with treatments sent families into a complex and confusing universe of diagnosis and treatment. The fragmentation of autism's professional jurisdiction between the medical and educational systems meant that mothers struggled to find comprehensive professional care that met the standards recommended by leading medical research organizations. Many mothers found it necessary to reduce their workforce participation in order to obtain and maintain their children's treatment regimes, a phenomenon that transcended social class. However, the consequences of reducing work had differential impacts on families. While married and high socioeconomic status mothers were more insulated from the potential negative effects of losing one partner's income, single and low SES mothers experienced greater precarity. These findings connect the structure and arrangement of professional jurisdictions to the experiences of parents, suggesting ways that the fragmentation of professional care for autism can have negative impacts for women, single mothers, and low SES families.

Suggested Citation

  • Brewer, Alexandra, 2018. "“We were on our own”: Mothers' experiences navigating the fragmented system of professional care for autism," Social Science & Medicine, Elsevier, vol. 215(C), pages 61-68.
    • Handle: RePEc:eee:socmed:v:215:y:2018:i:c:p:61-68
    DOI: 10.1016/j.socscimed.2018.08.039
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    References listed on IDEAS

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    1. McKeever, Patricia & Miller, Karen-Lee, 2004. "Mothering children who have disabilities: a Bourdieusian interpretation of maternal practices," Social Science & Medicine, Elsevier, vol. 59(6), pages 1177-1191, September.
    2. Levitsky, Sandra R., 2014. "Caring for Our Own: Why There is No Political Demand for New American Social Welfare Rights," OUP Catalogue, Oxford University Press, number 9780199993130.
    3. McKinlay, John & Marceau, Lisa, 2008. "When there is no doctor: Reasons for the disappearance of primary care physicians in the US during the early 21st century," Social Science & Medicine, Elsevier, vol. 67(10), pages 1481-1491, November.
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    Cited by:

    1. Hanson, Sarah & Gilbert, Duncan & Landy, Rebecca & Okoli, Grace & Guell, Cornelia, 2019. "Cancer risk in socially marginalised women: An exploratory study," Social Science & Medicine, Elsevier, vol. 220(C), pages 150-158.
    2. Dembo, Robert S. & Huntington, Nick & Mitra, Monika & Rudolph, Abby E. & Lachman, Margie E. & Mailick, Marsha R., 2022. "Social network typology and health among parents of children with developmental disabilities: Results from a national study of midlife adults," Social Science & Medicine, Elsevier, vol. 292(C).

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