restricted access 7. Participatory Research with Autistic Communities: Shifting the System
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169 7 Participatory Research with Autistic Communities Shifting the System Dora Raymaker and Christina Nicolaidis The relationship between scientists, minority communities, and mainstream society is complex and interconnected. Interactions between scientists and minorities can affect how society views, treats, and funds both community projects and academic research. Each year in the United States, hundreds of millions of dollars are poured into programs and research for people on the autism spectrum. But how many of these projects address the priorities of individuals on the spectrum? Traditional approaches to science—which typically do not include members of the population being studied in the development of the research—have a history of failing minority communities. Minority communities , in turn, have a history of distrusting researchers. Studies that are conducted on minority “subjects” without understanding either the community’s culture or the individuals who comprise the population may suffer from compromised sampling, weak study validity, and low intervention effectiveness. Minorities may feel angered by studies that are not helpful to them or that further marginalize them. Minorities’ distrust of science and scientists’ failure to include minorities in research development often create a feedback loop that further widens the divide between the two groups. In traditional approaches to autism research, the community of autistic individuals—like other minority communities defined by race, ethnicity, sexual preference, beliefs, or disability—also experiences this problematic dynamic. Participatory approaches to research offer a way to change these dynamics . Instead of viewing a minority population as simply a source of raw data, researchers conduct participatory inquiries with representatives from the minority group as full members of the research team. Community-based participatory research (CBPR) works to make the 170 DORA RAYMAKER AND CHRISTINA NICOLAIDIS scientist–minority relationship more beneficial for both parties. This chapter opens with an overview of some key issues in minority–scientist social dynamics and examines how they shape traditional autism research . It then explores how CBPR challenges traditional approaches to research, drawing examples from a CBPR project with autistic adults led by this paper’s two coauthors: an autistic self-advocate and systems scientist; and a CBPR researcher, parent, and physician. Through the lens of these multiple perspectives, this chapter both examines and enacts a shift to participatory modes of knowledge production. The Traditional Knowledge-Production System Our critique of research dynamics is based on an understanding of traditional knowledge production as a complex system. Systems can be defined as collections of parts having relationships to each other and to an environment (Lendaris 1986). Highly complex systems, such as social systems, have properties that can make them difficult to understand and affect. Trends may emerge over long time spans, and thus may be difficult to perceive. Parts of a system influence one another simultaneously with feedback. The behavior of a system as a whole is often synergistic and emergent, with its overall behavior neither reflective of nor deducible based on its parts in isolation. Complex systems are decentralized, their behavior emerging from the dynamics of the system itself rather than from an identifiable master control or initial motivator, which can make connections between cause and effect elusive . Finally, the structure of complex systems is generative: how the parts relate to one another is what creates the overall system behavior. This means that one needs to understand the system’s structure (the parts) and its dynamics (the relationships between the parts) in order to affect the system (Lendaris 1986; Senge 1990; Sterman 2000). The “machine” of scientific research is a highly complex system. Science depends on funding, funding priorities shift with public pressures , and even the questions asked by science can be influenced or generated by complex social forces. Though there is at times a polite delusion that science can remain “pure” or “objective” in the face of social pressure, academia operates in conjunction both with the larger society and, in the case of human-subjects research, with the populations it studies. Complex systems such as science are difficult and slow PARTICIPATORY RESEARCH 171 to change. Feedback interactions exist both among the parts of the system and within each part individually (for example, scientists influencing other scientists). These feedback loops make it hard to tease out what, exactly, is responsible for a particular outcome, as subtle shifts often have surprising, unanticipated, or indirect effects. A simplified model of the system of traditional research with minority communities is shown in Figure 7.1. In this...


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