Title: Person-oriented research ethics guidelines for autism research: Collaboratively developed best practices

Abstract: Autism is a spectrum condition characterized by differences in social interaction and social communication, and by the presence of restricted, repetitive patterns of behavior and interest, including atypical sensory and perception experiences. Autism diagnoses and autism research have increased dramatically in recent decades, across clinical and social sciences as well as ethics and the humanities. This talk addresses ethical and social issues in autism research, drawing on the model of person-oriented research ethics which focuses particularly on the everyday relational and experiential aspects of research participation. Through a review of autism research ethics literature and collaboration with a task force of autism stakeholders (including autistic self-advocates, parents, advocates, professionals, and researchers), we have developed a list of best practices and actionable suggestions for researchers looking to include participants on the autism spectrum in their studies. This talk will present some of these guidelines and reflect on the process of collaboratively developing them, as well as steps for future implementation.

Bio: Ariel Cascio, Ph.D. is a postdoctoral fellow at the Pragmatic Health Ethics Research Unit of the Institut de recherches cliniques de Montréal (Québec, Canada). Dr. Cascio received a doctorate in anthropology from Case Western Reserve University (Cleveland, OH, USA) after completing 11 months of ethnographic research on the experiences of adolescents and youth accessing autism-focused services in Italy. Several ongoing projects, primarily related to autism spectrum conditions, use lenses from anthropology and disability studies and focus on social and ethical issues, including in the context of research and health and human services. Dr. Cascio’s has been funded by the US-Italy Fulbright Commission and the Social Sciences and Humanities Research Council of Canada’s Banting Fellowship Program.