Towards an Understanding of Spirituality in the Context of Nonverbal Autism: A Scoping Review

Abstract

Towards an Understanding of Spirituality in the Context of Non-verbal Autism: A Scoping Review This paper represents the first stage of a larger continuing research study, exploring the spirituality of people with non-verbal autism. The purpose of this first stage of the research was to review existing literature on the topic and identify gaps intended to inform the direction(s) of the larger study. Building in the theological construct that all people are "fearfully and wonderfully made" in the divine image of an almighty creator, this research stems from the premise that the lives of all people, including those with profound disability, have purpose and inherent value. Therefore, if Divine intent does underpin "the life context of someone living with a profound disability", the next logical step in enquiry is to ponder "how a Divine encounter might be experienced by such a person, and how, if at all, would this encounter be expressed by the recipient" [authors]. Deland (1999) proposed that "It may well be that the experiences of people with disabilities will provide not only new images but deeper insight into God's image than those temporarily-abled have ever perceived." (p. 51). As such the spirituality of people with disabilities is worthy of exploration. The reported increase over the last few decades of the number of people diagnosed with autism, and the particular life context of those with non-verbal autism, who are the least researched and understood people diagnosed with Autism Spectrum Disorder (ASD), formed the impetus for this research. Autism Spectrum Disorder The global prevalence of Autism Spectrum Disorders was recently estimated at 1/160 people (Elsabbagh et al., 2012; World Health Organisation [WHO], 2013), or 1% of the world's population (Lai, Lombardo, & Baron-Cohen, 2014). It is important to note however that "The prevalence of ASDs in many low-and middle-income countries is as yet unknown" SPIRITUALITY IN NON-VERBAL AUTISM: A SCOPING REVIEW 2 (WHO, 2013, p. 6). Statistics reveal an alarming growth in the diagnosis of autism; in Australia an estimated 115,400 individuals had a diagnosis of ASD in 2012 compared to 64, 400 people in 2009 (Australian Bureau of Statistics [ABS], 2014). Although there is some argument that the increase in autism could be attributed more to factors such as changing diagnostic criteria, increasing awareness of the disorder, and methodological issues rather than a true increase in cases (e.g.

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

“…By conducting research with people living the experience of nonverbal autism, rather than doing research on them (Ashby, 2011;Wickenden, 2011), the study aligned with the United Nation's (2006) Convention on the Rights of Persons with Disabilities. A recent scoping literature review confirmed the gap in available primary knowledge about people with Level 3 autism and concluded that there is a need for empirical investigation of the personal perspectives of this population, particularly in relation to spirituality (Hills et al, 2016). This conclusion provided the impetus for the current study.…”

“…As an example, Teachman and colleagues (2018) utilised a critical dialogical methodology which attempted to ensure authenticity by combining interviews with photo and visual methods of communication (see also Teachman, 2016). Nonetheless, whilst there is little research which includes people with severe autism as direct respondents, there are virtually no studies pertaining to their perspectives regarding spirituality (Hills et al, 2016).…”

“…As such, conducting research with them presents complex challenges, which has resulted in a dearth of information about this group. Therefore, although classifications of severe autism represent approximately 30% of overall diagnoses, from a scientific point of view, "we know virtually nothing about them" (Helen Tager-Flusberg communication cited in Schmidt, 2013, p. 179), particularly from their own perspective (Hills et al, 2016;Mietola et al, 2017). This is despite the increasing push within various disciplines for researchers to recognise the value of data obtained directly from the population under study rather than secondary sources such as observation, especially in regards to research with people with disability (Kirby, Dickie, & Baranek, 2015;Morris, 2003).…”

“…One of the benefits of technological advances in communication aids for many people diagnosed with Level 3 autism is that previously unrecognised and highly sophisticated levels of intelligence and awareness are now observed in this population (Ashby, 2011;Ashby, Jung, Woodfield, Vroman, & Orsati, 2015;Goddard & Goddard;Hills et al, 2016). This discovery has transformed the ways that researchers can approach working with people with nonverbal autism.…”

“…In the initial stages of the research process, a collection of grey literature provided the only information about the research topic. These works were included in the Scoping Literature Review and titled the 'Nonverbal Narrative' literature to honour the people they represented (Hills et al, 2016). The inclusion of this literature laid a foundational insight into the lived experience of people with autism who do not speak to communicate.…”