A Participatory Approach to Autism Research, Ethics, and the Neurodiversity Movement

Ohio State University, The, Columbus OH

Investigators

Abstract

Portions of the autism community identify with the neurodiversity movement, which asserts that autism is a form of difference to be supported rather than a disease to be cured. Given the emergence of the movement, a key focus of this project is to better understand ethical concerns emerging within the autism community about autism research practices. The research team will accomplish this goal by partnering with autistic people. The team will also consult with caregivers and autism researchers. Among the questions the research team will address is whether current ethical frameworks effectively capture the concerns of the autism community. The project will identify knowledge gaps and inform research involving members of the autism community or other neurodiverse individuals. This project aims to provide information and training for autism researchers about how to conduct research that is respectful of members of the autism community. To do this, the research team will: (1) conduct focus groups aimed at identifying ethical concerns of neurodiversity advocates, (2) create ethics training for autism researchers, and (3) evaluate the training’s effectiveness at fostering ethical attitudes as it pertains to conducting autism research. Online focus groups will include autistic adults, parents of autistic children, and autism researchers. Research participants will discuss their opinions about the risks and benefits of several types of autism research. The team will use participant responses to determine how ethical concerns align within existing, or new, frameworks of ethics and justice. The responses will inform the design of a training to help researchers learn about the research-related perspectives of autistic people, the ethical concerns that may arise during autism research, and how to best manage these concerns. The team will distribute the training to four groups: undergraduates, graduate students, researchers, and members of institutional review boards. This project is funded through the ER2 program by the Directorate for Social, Behavioral and Economic Sciences. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.