Skip to main content
Top
Gepubliceerd in: Journal of Autism and Developmental Disorders 10/2022

30-10-2021 | Commentary

Making Research Possible: Barriers and Solutions For Those With ASD and ID

Auteurs: Audrey Thurm, Alycia Halladay, David Mandell, Melissa Maye, Sarah Ethridge, Cristan Farmer

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 10/2022

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.
Literatuur
go back to reference Christensen, D. L., Maenner, M. J., Bilder, D., Constantino, J. N., Daniels, J., Durkin, M. S., & Dietz, P. (2019). Prevalence and characteristics of autism spectrum disorder among children aged 4 years - early autism and developmental disabilities monitoring network, seven sites, United States, 2010, 2012, and 2014. MMWR Surveillance Summaries, 68(2), 1–19. https://doi.org/10.15585/mmwr.ss6802a1CrossRefPubMedCentral Christensen, D. L., Maenner, M. J., Bilder, D., Constantino, J. N., Daniels, J., Durkin, M. S., & Dietz, P. (2019). Prevalence and characteristics of autism spectrum disorder among children aged 4 years - early autism and developmental disabilities monitoring network, seven sites, United States, 2010, 2012, and 2014. MMWR Surveillance Summaries, 68(2), 1–19. https://​doi.​org/​10.​15585/​mmwr.​ss6802a1CrossRefPubMedCentral
go back to reference Maes, B., Nijs, S., Vandesande, S., Van Keer, I., Arthur-Kelly, M., Dind, J., & Van der Putten, A. (2021). Looking back, looking forward: methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 34(1), 250–262. https://doi.org/10.1111/jar.12803CrossRefPubMed Maes, B., Nijs, S., Vandesande, S., Van Keer, I., Arthur-Kelly, M., Dind, J., & Van der Putten, A. (2021). Looking back, looking forward: methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 34(1), 250–262. https://​doi.​org/​10.​1111/​jar.​12803CrossRefPubMed
go back to reference Spong, C. Y., & Bianchi, D. W. (2018). Improving public health requires inclusion of underrepresented populations in research. JAMA, 319(4), 337–338.CrossRef Spong, C. Y., & Bianchi, D. W. (2018). Improving public health requires inclusion of underrepresented populations in research. JAMA, 319(4), 337–338.CrossRef
go back to reference Tuffrey-Wijne, I., Lam, C. K. K., Marsden, D., Conway, B., Harris, C., Jeffrey, D., & Newton, D. (2020). Developing a training course to teach research skills to people with learning disabilities: “it gives us a voice. We CAN be researchers!” British Journal of Learning Disabilities, 48(4), 301–314.CrossRef Tuffrey-Wijne, I., Lam, C. K. K., Marsden, D., Conway, B., Harris, C., Jeffrey, D., & Newton, D. (2020). Developing a training course to teach research skills to people with learning disabilities: “it gives us a voice. We CAN be researchers!” British Journal of Learning Disabilities, 48(4), 301–314.CrossRef
go back to reference Werner, S., & Roth, D. (2014). Stigma in the field of intellectual disabilities: Impact and initiatives for change The stigma of disease and disability: Understanding causes and overcoming injustices (pp. 73–91). American Psychological Association. Werner, S., & Roth, D. (2014). Stigma in the field of intellectual disabilities: Impact and initiatives for change The stigma of disease and disability: Understanding causes and overcoming injustices (pp. 73–91). American Psychological Association.
Metagegevens
Titel
Making Research Possible: Barriers and Solutions For Those With ASD and ID
Auteurs
Audrey Thurm
Alycia Halladay
David Mandell
Melissa Maye
Sarah Ethridge
Cristan Farmer
Publicatiedatum
30-10-2021
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 10/2022
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-021-05320-1

Andere artikelen Uitgave 10/2022

Journal of Autism and Developmental Disorders 10/2022 Naar de uitgave