Abstract

In recent decades, autistic and other disabled people have fought for–and won–gains in research inclusion, both as participants and as researchers, and fueled shifts toward more ethical research with disability populations. Despite this, by their nature, large, complex systems like the social, cultural, and political systems driving bioethics shift very slowly. This chapter (1) presents four ethical tensions in the past and present landscape of autism research (models of disability, definitions of normality, politics of inclusion, priorities in research), (2) applies a critical systems thinking lens to understand the knowledge-power dynamics that generate these tensions, and (3) uses those dynamics in relationship to Meadow’s leverage framework to consider points of impact for future change. Systems thinking teaches that, given the vast complexity of the world, we can neither control nor predict the future, but we can intentionally work toward the kinds of inclusive, empowered futures we would like to realize.