Abstract
Participation in research can provide direct and indirect benefit to individuals with autism spectrum disorder (ASD), their caregivers, families, and society at large. Unfortunately, individuals with high support needs, including those with intellectual disability, cognitive disability or minimal verbal ability, are often systematically excluded from research on ASD. This limits the ability to generalize discoveries to all people with ASD, and results in a disparity in who benefits from research. This piece outlines the importance and extent of the problem, which is part of a broader lack of inclusivity in ASD research. It also provides examples of studies that have directly addressed issues that arise when conducting inclusive research and makes recommendations for researchers to reduce disparities in research participation.
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Acknowledgements
The views expressed in this article do not necessarily represent the views of the National Institutes of Health, the Department of Health and Human Services, or the United States Government. The authors wish to thank those who attended and provided insights and perspectives during an Autism Science Foundation meeting focused on strategies to include traditionally underserved communities in research. They include: Matt Goodwin, Terry Hamlin, Paul Kotler, Melinda Kotler, Amy Lutz, Susan Senator, Matthew Siegel, Alison Singer, Helen Tager-Flusberg, Judith Ursitti, and Alyssa Hillary Zisk.
Funding
This research was supported by meeting funds from the Autism Science Foundation. Alycia Halladay is an employee of the Autism Science Foundation. This work was also supported in part by the Intramural Research Program of the NIMH (ZIC-MH002961 to Audrey Thurm).
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Thurm, A., Halladay, A., Mandell, D. et al. Making Research Possible: Barriers and Solutions For Those With ASD and ID. J Autism Dev Disord 52, 4646–4650 (2022). https://doi.org/10.1007/s10803-021-05320-1
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DOI: https://doi.org/10.1007/s10803-021-05320-1