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Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities

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Abstract

Autistic individuals who are also people of color or from lower socioeconomic strata are historically underrepresented in research. Lack of representation in autism research has contributed to health and healthcare disparities. Reducing these disparities will require culturally competent research that is relevant to under-resourced communities as well as collecting large nationally representative samples, or samples in which traditionally disenfranchised groups are over-represented. To achieve these goals, a diverse group of culturally competent researchers must partner with and gain the trust of communities to identify and eliminate barriers to participating in research. We suggest community-academic partnerships as one promising approach that results in high-quality research built on cultural competency, respect, and shared decision making.

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Notes

  1. For this manuscript we have chosen to use both identity- and person- first language throughout to acknowledge the range of preferences of our stakeholders. We respect, and are engaged in, the ongoing conversation.

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Acknowledgements

The authors wish to thank and acknowledge the following individuals who attended and participated in an Autism Science Foundation meeting where they provided their insights and perspectives on strategies to increase researcher engagement of diverse populations: Amy Daniels, Sandy Magana, Amy Wetherby, Maria Kodjoe and Michael Brown.

Funding

This commentary was funded/supported by the Autism Science Foundation.

Author information

Authors and Affiliations

  1. Center for Health Policy and Health Services Research, Henry Ford Health System, 3A32, 3rd Floor, One Ford Place, Detroit, MI, 48202, USA

    Melissa Maye

  2. Juniper Gardens Children’s Project, University of Kansas, Kansas City, KS, USA

    Brian A. Boyd

  3. Department of Psychology, Florida International University, Miami, FL, USA

    Frances Martínez-Pedraza

  4. Rutgers University, Piscataway, NJ, USA

    Alycia Halladay

  5. Autism Science Foundation, New York, NY, USA

    Alycia Halladay

  6. National Institute of Mental Health (NIMH)’s Intramural Research Program (IRP), Bethesda, MD, USA

    Audrey Thurm

  7. Center for Mental Health, Pearlman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA

    David S. Mandell

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  1. Melissa Maye
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  2. Brian A. Boyd
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  3. Frances Martínez-Pedraza
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  4. Alycia Halladay
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  5. Audrey Thurm
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  6. David S. Mandell
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Contributions

All authors contributed to commentary conceptualization and writing of the manuscript. Dr. Mandell, Halladay, and Thurm drafted an initial outline that Drs. Maye, Boyd, and Martinez substantially contributed to. Dr. Maye wrote the initial draft of the manuscript and all authors reviewed, commented, and edited subsequent drafts and signed off on the final manuscript.

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Correspondence to Melissa Maye.

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This commentary paper was supported in part by the Autism Science Foundation.

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Maye, M., Boyd, B.A., Martínez-Pedraza, F. et al. Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities. J Autism Dev Disord 52, 4206–4211 (2022). https://doi.org/10.1007/s10803-021-05250-y

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