Ethical considerations when conducting research with people with nonverbal autism: A commentary on current processes and practices
Karenne J Hills ,Jayne Clapton & Pat Dorsett
ABSTRACT: People with severe (nonverbal) autism are significantly under researched. Physical, communication and social limitations have created misconceptions concerning their ability to engage in meaningful communication and to participate in collaborative research. Those who are nonverbal often communicate by use of a specialised device that requires the assistance of a personal facilitator. This process, while representing the preferred and frequently only method of communication for people with nonverbal autism, is subject to significant criticism by some scholars. Therefore, ethical and practical considerations concerning authenticity, capacity and consent require careful attention when conducting research with this population. These factors however, must be held within a methodological design that provides space for the inclusion, respect and empowerment of research participants to ensure their voices are authentically represented. This commentary provides a response to these considerations as they were addressed within a research study that used interview as a method of data collection for people with nonverbal autism.