Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant’s values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants.
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Inhibitors can also be properly described as ‘barriers’.
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The authors acknowledge the contributions of Trevor Clark and Susanna Baldwin, Autism Spectrum Australia to project establishment and design; and the contributions of the following to participant recruitment, data collection and data analysis: Lahna Bradley, La Trobe University; Susan Bruck, Autism Spectrum Australia; Heidi Stieglitz Ham, Curtin University; Emma Hyland and Damian Santomauro, The University of Queensland. The authors sincerely thank the study participants for their time, opinions and ideas.
The authors acknowledge the financial support of the Cooperative Research Centre for Living with Autism (Autism CRC), established and supported under the Australian Government’s Cooperative Research Centre’s Program.
All authors except Kaaren Haas collaborated on the conception of the study. All authors worked on the design of the study. Kaaren Haas coordinated and conducted the participant recruitment, data collection and data analysis, and drafted the manuscript, with input from all other authors. All authors read and approved the manuscript.
Conflict of interest
The authors declare no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
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Haas, K., Costley, D., Falkmer, M. et al. Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders. J Autism Dev Disord 46, 1793–1805 (2016). https://doi.org/10.1007/s10803-016-2708-6