Understanding and addressing the impact of autism on the family

Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA, USA.
LDI issue brief 04/2012; 17(7):1-4.
Source: PubMed


Children and adults with autism spectrum disorders (ASDs) have needs that challenge our systems of care. A new study estimates ASDs cost more than $126 billion each year in the U.S.--an amount that reflects both the costs of providing educational and medical services as well as the costs of not intervening early and effectively enough to prevent lifelong disability. This Issue Brief summarizes the implications of childhood autism for parental employment and earnings, and analyzes whether community-based services can reduce costly, psychiatric hospitalizations of children with ASDs.

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    • "Critics have specifically argued that the dominance of research on risk factors and biological causes offers little understanding of the social conditions that shape autism experience. Autistic individuals and their families continue to face social stigma, difficulties navigating diagnosis, treatment and services, and social and economic challenges, especially as autistic individuals age (Farrugia, 2009; Phelps et al, 2009; Mandell, 2012; Volkmar and Wolf, 2013). For these reasons and others, self-advocates and their allies increasingly advocate autism acceptance rather than biological research or awareness (Durbin-Westby, 2010; Ne'eman, 2010). "
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    ABSTRACT: Research on autism has increased significantly over the past several decades. This upsurge parallels the steep rise in autism diagnoses. Together, these conditions have increased the number of people occupying the social role of research participants, including investigators, analysts and subjects. Simultaneously, addressing scientific questions about autism now involves new research efforts including prospective enriched-risk cohort studies exploring the environmental and genetic causes of autism during pregnancy and early child development. Rather than one-time donations, these studies require extended commitments on the part of all those involved in the research. This article draws on ethnographic observations of research practices and interviews with investigators, study staff and participants to examine the emergent relationships between research and care in this area of autism science. I introduce the notion of ‘taking care’ to describe the forms of anticipatory labor and mutual extraction involved in longitudinal research. Through tracing three modes of taking care across practices of study design, data collection and participation, I argue that research and care become intimately intertwined and mutually constructed during the research process. These findings reflect how processes of taking and giving are constitutive of research participation for all those engaged in the research enterprise. This article considers the relationships between these practices and new forms of community and sociality related to biomedical science.
    BioSocieties 09/2014; 9(3). DOI:10.1057/biosoc.2014.14 · 1.26 Impact Factor

  • Journal of the American Academy of Child and Adolescent Psychiatry 10/2012; 51(10):987-9. DOI:10.1016/j.jaac.2012.07.012 · 7.26 Impact Factor
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    ABSTRACT: Children with an autism spectrum disorder (ASD) experience better short-term and long-term outcomes if they participate in interventions aimed at ameliorating ASD core deficits. Despite that the preschool setting has been suggested as an efficient and effective context for implementing these early ASD interventions, improving core deficits is rarely the focus of the status quo ASD preschool experience. In this review, we explain the relative benefits of conducting interventions aimed at improving ASD core deficits in the preschool setting and how often preschool-based ASD core deficit intervention studies are conducted. Promising recent preschool-based interventions are reviewed. We conclude with suggestions for how to increase the momentum of this research and have these interventions permeate the school context.
    International Review of Research in Mental Retardation 01/2014; 47:99-150. DOI:10.1016/B978-0-12-800278-0.00004-X
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