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

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

Authors:

Karenne J Hills ,

Griffith University, AU
About Karenne
Ms Karenne Hills is a Ph.D. candidate at Griffith University, studying the spiritual experiences of people with non-verbal autism. She has a special interest in the theological and spiritual considerations for people with disability, an interest born largely out of her personal journey with her two sons, each of whom live with significant disabilities. Karenne has presented her work at national and international conferences.
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Jayne Clapton,

Griffith University, AU
About Jayne
Prof Jayne Clapton, BA, Ph.D. is an Adjunct Professor in the School of Human Services and Social Work at Griffith University in Queensland, Australia.  Jayne is a Disability Studies scholar who, for many years, has researched the relationship between ethics, theology, inclusion and disability, particularly intellectual disability.  Jayne previously convened an international special interest research group on ethics and intellectual disability and has presented at national and international conferences.
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Pat Dorsett,

Griffith University, AU
About Pat
Dr Pat Dorsett is a Senior Lecturer in the School of Human Services and Social Work. Her research is primarily in the disability and rehabilitation fields. She has a particular interest in the lived experience of people in the context of life challenges. Her research has been published in high quality peer reviewed journals and presented at national and international conferences.
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Kirsty Andersen

Christian Heritage College, AU
About Kirsty
Miss Kirsty Andersen has conducted research across a number of disciplines including counselling, education, religion, and suicide, and has several publications in these areas. Her research interests include disability, and spiritual phenomena in relation to mental health.
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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.
How to Cite: Hills, K.J., Clapton, J., Dorsett, P. and Andersen, K., 2020. Conducting Research with People with Nonverbal Autism: An Inclusive Methodological Approach. Journal of Social Inclusion, 11(1), pp.5–23. DOI: http://doi.org/10.36251/josi.162
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Published on 10 Aug 2020.
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