Conducting Research with People with Nonverbal Autism: An Inclusive Methodological Approach

In: Journal of Social Inclusion: JoSI, Band 11, Heft 1, S. 5-23

Abstract

Abstract
Current academic literature exposes a paucity of information about people with severe (nonverbal) autism from their own perspective. Most research pertaining to this population has obtained data from a secondary source such as a parent or caregiver. This paper describes the methodological approach to a study exploring the spirituality of people with nonverbal autism. The study was intentionally designed to work inclusively with people with nonverbal autism, rather than conducting research on or about them. As such, opportunity was provided for them to participate as direct respondents in the research process. The study explored the use of interview as a strategy for sourcing data from participants with nonverbal autism. A bricolage approach incorporating participant's personal narratives provided an inclusive method for working with people who do not use spoken language to communicate. As communicating with this population necessitates the use of some type of augmentative device, certain strategies were adopted to address the particular practical, methodological and ethical challenges confronted during the research process. Interviews resulted in a rich source of data, providing unique insights into the lived experience of a severely under researched population. This study demonstrated that with researcher flexibility, a methodology that provides participants meaningful and inclusive involvement is not only possible, but beneficial in learning more about this marginalised group. Furthermore, this paper introduces a methodological approach that provides a platform for further research concerning people who do not communicate by speech.