Taking care: Anticipation, extraction and the politics of temporality in autism science

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.

How the genome got a life span

“…During this study, she observed and interviewed participants in studies exploring environmental and genetic contributions to autism during fetal development and early life. Her fieldwork drew her attention to the social and ethical dynamics of longitudinal research on developmental disorders (Lappé 2014). In the studies she followed, scientists sampled the environments and bodies of autistic children, their siblings, and parents, posing questions about how the timing of environmental exposures influenced autism risk.…”

The maternal body as environment in autism science

“…My larger study included interviews with mothers of autistic children who were participants in a prospective cohort study exploring the environmental and genetic causes of autism during pregnancy and early childhood (MARBLES, 2016). While these interviews are not quoted, I mention them to provide a sense of the project from which this analysis of secondary resources is drawn and because these women’s experiences informed my interest in how autism risk is being materialized in research practice (Lappé, 2014). …”

“…The emergence of the maternal body as a site of growing attention in autism science is thus in line with extensions of women’s responsibilities for care across the life course (Blum, 2015; Lappé and Landecker, 2015a; Waggoner, 2013; Wolf, 2011). Efforts to expand responsibility for children’s wellbeing earlier in developmental time reflect what Waggoner (2013) has called a contemporary ethic of ‘anticipatory motherhood’, as well as a general sense of anticipation that increasingly accompanies risk discourse (Adams et al, 2009; Friese, 2013; Lappé, 2014). …”

“…Despite these investigations, to date environmental risks have largely been examined for their effects on the developing fetus in utero , placing attention on women’s bodies as primary conduits for autism risk. The abundant attention paid to fetal development often displaces other notions of ‘the environment’, shaping how research is designed, the samples collected and analyzed, and their results understood (Daniels, 2006; Lappé, 2014). …”

Communicating Care : The Contradictions of HPV Vaccination Campaigns

“…6;Lappé 2014;Felder and Oechsner 2015;Puig de la Bellacasa 2015;Schrader 2015;Felt 2016: 193). They discuss how care requires and/or fosters a reorientation of time.…”