Considering Methodological Accommodation to the Diversity of ASD: A Realist Synthesis Review of Data Collection Methods

Background:

Qualitative inquiry related to the lived experiences of ASD is shown as largely drawing on traditional approaches; most notably, interviews and focus groups (Tesfaye, 2016). These approaches potentially limit data elicitation from subpopulations within ASD such as individuals with co-existing cognitive and/or communicative challenges. Such subgroups potentially have unique experiences that merit greater understanding. Methodological adaptation appears needed to incorporate a more flexible range of research approaches. To fail to do so risks errors of commission (e.g., presumption of data validity) and omission (e.g., missed sub-group representation of experience).

Objectives:

The aim of this umbrella review was to identify potential and promising approaches to data collection that could ensure more inclusion and accommodation of the range of ASD expression. Drawing on a realist synthesis approach, this review explored the following research question: “What data collection approaches inform the assessment of lived experience across the breadth of cognitive and communicative abilities and expression in ASD?”.

Methods:

This realist synthesis review intentionally included relevant yet disparate substantive areas, populations and contexts to amplify potentially salient understanding. Data collection methods elicited lived experience or first person accounts of populations with variable levels of language and cognitive expression. Articles were reviewed, identified and coded.

This review drew on three relevant yet distinct literature bases and populations: (i) persons with ASD, (ii) persons with intellectual disability, and (iii) persons with dementia. Selection of these diverse disability areas and populations accounted for an inherent range of inter- and intra-population abilities/disabilities and experiences which included domains of language expression, communication and cognition.

Results:

The overall search yielded a total of 1,244 studies; 162 studies were confirmed to be eligible for inclusion. Studies meeting inclusion criteria represented a variety of research designs that consisted of exploratory, descriptive and evaluative research. Common methods in studies included interviews, focus groups, observation, surveys, standardized assessments and inventories. Methods that were viewed to be salient to the application of strategies for eliciting first-hand perspectives included photovoice (n= 6 studies), Talking Mats (n= 2 studies), ‘deep assessment’ (n= 1 study), SenseCam (n= 2 studies), and TimeSlips (n= 2 studies). These approaches identify potential methods for more inclusive engagement in studies than traditionally may have been accommodated.

Conclusions:

Findings from this review inform person-centered research in the aim of eliciting depth and breadth of diverse lived experience and first-person expression in ASD. Emerging evocative approaches offer methodologic possibilities, yet may impose challenges based on data conformity and a lack of clearly defined methods for the ASD population. Notwithstanding such challenges, optimal data yield warrants careful consideration relative to the important aim of inclusive representation in ASD sampling. Addressing these considerations have the potential to advance knowledge about first person experiences and needs of people with ASD and in so doing, move the research community beyond conventional methods in the aim of inclusive ASD research.