Navigations and Limitations: The Issue of Institutions

Abstract

The activities of daily life required when a child is diagnosed with autism introduce parents into relationships with various institutions. These activities order parents’ lives and determine their priorities, with whom they associate and interact, and ultimately how they experience autism. Several of the parents called themselves “autism warriors,” and saw themselves in a position of battling various institutions, fighting for the rights of their children. Why do parents enter into battle? What about autism requires them to engage in “combat”? How does autism order parents’ activities with institutions in such a way that they come to identify as warriors? In this chapter I explore these institutional interfaces by considering Latour’s concept of social actors and actants (2005), by considering institutions, such as schools and healthcare systems, as capable of social action themselves, as well as the individuals and technologies within the institutions. Using social actors as a way to understand the power of institutions and the processes they create and require, I explore how “war-like” activity orders parents lives. First, I begin by discussing Latour’s term, actants, and the ways that I apply it to the institutions with which parents engage. Next I draw on Goffman’s work to discuss how these institutions manage and order children’s and parents’ bodies and activities.