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13-01-2023 | Original Paper

Mind the NIH-Funding Gap: Structural Discrimination in Physical Health–Related Research for Cognitively Able Autistic Adults

Auteurs: T. A. Meridian McDonald, Audrey Scudder

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 4/2024

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Abstract

Autistic adults experience disparities in physical health and health care access. A major barrier to addressing these disparities is a lack of federal funding for research on this topic. In seeking funding from the National Institutes of Health (NIH), we discovered nodes that contribute to structural discrimination in physical health–related research for autistic adults. To examine this structural discrimination, we systematically searched funded research on all physical health–disparity conditions in autistic adults using NIH RePORTER. Among 61 unique studies, none focused on improving the relevant physical health condition through intervention, programs, or services for autistic adults. Thus, we need updated policies and procedures that support research on physical health disparities in populations with developmental or mental health conditions.
Literatuur
go back to reference Baumer, N. T., Becker, M. L., Capone, G. T., Egan, K., Fortea, J., Handen, B. L., Head, E., Hendrix, J. E., Litovsky, R. Y., Strydom, A., Tapia, I. E., & Rafii, M. S. (2022). Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group. Journal of Neurodevelopmental Disorders, 14(1), 22. https://doi.org/10.1186/s11689-022-09435-z.CrossRefPubMedPubMedCentral Baumer, N. T., Becker, M. L., Capone, G. T., Egan, K., Fortea, J., Handen, B. L., Head, E., Hendrix, J. E., Litovsky, R. Y., Strydom, A., Tapia, I. E., & Rafii, M. S. (2022). Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group. Journal of Neurodevelopmental Disorders, 14(1), 22. https://​doi.​org/​10.​1186/​s11689-022-09435-z.CrossRefPubMedPubMedCentral
go back to reference Burrows, C. A., Grzadzinski, R. L., Donovan, K., Stallworthy, I. C., Rutsohn, J., St. John, T., Marrus, N., Parish-Morris, J., MacIntyre, L., Hampton, J., Pandey, J., Shen, M., Botteron, K. N., Estes, A. M., Dager, S. R., Hazlett, H. C., Pruett, J. R., Schultz, R. T., Zwaigenbaum, L., & Elison, J. T. (2022). A data driven approach in an unbiased sample reveals equivalent sex ratio of autism spectrum disorder associated impairment in early childhood. Biological Psychiatry. Retrieved September 5, 2021, from https://doi.org/10.1016/j.biopsych.2022.05.027 Burrows, C. A., Grzadzinski, R. L., Donovan, K., Stallworthy, I. C., Rutsohn, J., St. John, T., Marrus, N., Parish-Morris, J., MacIntyre, L., Hampton, J., Pandey, J., Shen, M., Botteron, K. N., Estes, A. M., Dager, S. R., Hazlett, H. C., Pruett, J. R., Schultz, R. T., Zwaigenbaum, L., & Elison, J. T. (2022). A data driven approach in an unbiased sample reveals equivalent sex ratio of autism spectrum disorder associated impairment in early childhood. Biological Psychiatry. Retrieved September 5, 2021, from https://​doi.​org/​10.​1016/​j.​biopsych.​2022.​05.​027
go back to reference Inzlicht, M., & Schmader, T. (Eds.). (2011). Stereotype threat: theory, process, and application. Oxford University Press. Inzlicht, M., & Schmader, T. (Eds.). (2011). Stereotype threat: theory, process, and application. Oxford University Press.
go back to reference Levy, S. E., Giarelli, E., Lee, L. C., Schieve, L. A., Kirby, R. S., Cunniff, C., Nicholas, J., Reaven, J., & Rice, C. E. (2010). Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. Journal of Developmental and Behavioral Pediatrics, 31(4), 267–275. https://doi.org/10.1097/DBP.0b013e3181d5d03b.CrossRefPubMed Levy, S. E., Giarelli, E., Lee, L. C., Schieve, L. A., Kirby, R. S., Cunniff, C., Nicholas, J., Reaven, J., & Rice, C. E. (2010). Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. Journal of Developmental and Behavioral Pediatrics, 31(4), 267–275. https://​doi.​org/​10.​1097/​DBP.​0b013e3181d5d03b​.CrossRefPubMed
go back to reference Mason, D., Ingham, B., Urbanowicz, A., Michael, C., Birtles, H., Woodbury-Smith, M., Brown, T., James, I., Scarlett, C., Nicolaidis, C., & Parr, J. R. (2019). A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults. Journal of Autism and Developmental Disorders, 49(8), 3387–3400. https://doi.org/10.1007/s10803-019-04049-2.CrossRefPubMedPubMedCentral Mason, D., Ingham, B., Urbanowicz, A., Michael, C., Birtles, H., Woodbury-Smith, M., Brown, T., James, I., Scarlett, C., Nicolaidis, C., & Parr, J. R. (2019). A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults. Journal of Autism and Developmental Disorders, 49(8), 3387–3400. https://​doi.​org/​10.​1007/​s10803-019-04049-2.CrossRefPubMedPubMedCentral
go back to reference Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E. V., Kapp, S. K., Weiner, M., & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism: The International Journal of Research and Practice, 19(7), 824–831. https://doi.org/10.1177/1362361315576221.CrossRefPubMed Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E. V., Kapp, S. K., Weiner, M., & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism: The International Journal of Research and Practice, 19(7), 824–831. https://​doi.​org/​10.​1177/​1362361315576221​.CrossRefPubMed
go back to reference Raymaker, D. M., McDonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., Hourston, S., & Nicolaidis, C. (2017). Barriers to healthcare: instrument development and comparison between autistic adults and adults with and without other disabilities. Autism: The International Journal of Research and Practice, 21(8), 972–984. https://doi.org/10.1177/1362361316661261.CrossRefPubMed Raymaker, D. M., McDonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., Hourston, S., & Nicolaidis, C. (2017). Barriers to healthcare: instrument development and comparison between autistic adults and adults with and without other disabilities. Autism: The International Journal of Research and Practice, 21(8), 972–984. https://​doi.​org/​10.​1177/​1362361316661261​.CrossRefPubMed
Metagegevens
Titel
Mind the NIH-Funding Gap: Structural Discrimination in Physical Health–Related Research for Cognitively Able Autistic Adults
Auteurs
T. A. Meridian McDonald
Audrey Scudder
Publicatiedatum
13-01-2023
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 4/2024
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-022-05856-w

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