Abstract
Drawing on a realist synthesis approach, this review identified qualitative data collection approaches that inform “first-person” lived experience in autism spectrum disorder (ASD) across phenotypic expression. It further drew upon methodologic approaches used in other conditions that similarly represent individuals with impaired verbal expression. The aim of this realist synthesis approach was to identify methods with relevance to participants across the autism spectrum. Methods that emerged for eliciting first-hand perspectives consisted of photovoice, Talking Mats, “deep assessment,” SenseCam, and TimeSlips. Applying these methodologies in ASD has the potential to advance knowledge about the quality of life, priorities and needs of people with ASD, and advanced qualitative approaches beyond methods that are not inclusive of cognitive and expressive diversity.
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Acknowledgements
We want to acknowledge with gratitude the input of Dr. Mayada Elsabbagh, Ms. Rackeb Tesfaye, Dr. Pat Mirenda, Dr. Stelios Georgiades, and Dr. Peter Szatmari in support of this work.
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Appendix
Appendix
Search Results
The 162 included studies were retrieved for a review of each study’s respective methods within the three substantive and population areas, as presented in Figs. 1, 2, and 3 (according to population).
Search results for ASD
Search results for intellectual disability
Search results for dementia
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Nicholas, D.B., Orjasaeter, J.D. & Zwaigenbaum, L. Considering Methodological Accommodation to the Diversity of ASD: A Realist Synthesis Review of Data Collection Methods for Examining First-Person Experiences. Rev J Autism Dev Disord 6, 216–232 (2019). https://doi.org/10.1007/s40489-019-00164-z
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DOI: https://doi.org/10.1007/s40489-019-00164-z