Conducting Research with People with Nonverbal Autism: An Inclusive Methodological Approach
Published 10th August 2020
K Hills, J Clapton, P Dorsett & K Andersen
Abstract: Current academic literature exposes a paucity of information about people diagnosed with Level 3 (severe social and communication deficits requiring substantial support) autism from their own perspective. Most research pertaining to this population has obtained data from secondary sources such as a parent or caregiver. This paper describes the methodological approach to a study exploring the spirituality of people with Level 3 autism, using interview as a strategy for sourcing data. The study was intentionally designed to work inclusively with this population, rather than conducting research on or about them. As such, opportunity was provided for participants to be direct respondents in the research process. Participants were seven adults, aged
between 23 and 53, who had been diagnosed with Level 3 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.
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