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Journal of Autism and Developmental Disorders

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Gepubliceerd in:

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

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.

vorige artikel Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework

American Academy of Child and Adolescent Psychiatry 2013 Comorbidity Treatment in Autism Spectrum Disorders and Intellectual Disabilities. Retrieved from https://www.aacap.org/aacap/Policy_Statements/2013/Comorbidity_Treatment_in_Autism_Spectrum_Disorders_and_Intellectual_Disabilities.aspx

Biros, M. (2018). Capacity, vulnerability, and informed consent for research. Journal of Law, Medicine and Ethics, 46(1), 72–78. https://doi.org/10.1177/1073110518766021 CrossRef

Boxall, K., & Ralph, S. (2011). Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research. British Journal of Learning Disabilities, 39(3), 173–180. https://doi.org/10.1111/j.1468-3156.2010.00645.x CrossRef

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.ss6802a1 CrossRefPubMedCentral

Cleaver, S., Ouellette-Kuntz, H., & Sakar, A. (2010). Participation in intellectual disability research: a review of 20 years of studies. Journal of Intellectual Disability Research, 54(3), 187–193. https://doi.org/10.1111/j.1365-2788.2010.01256.x CrossRefPubMed

Gabrielsen, T. P., Anderson, J. S., Stephenson, K. G., Beck, J., King, J. B., Kellems, R., & South, M. (2018). Functional MRI connectivity of children with autism and low verbal and cognitive performance. Mol Autism, 9, 67. https://doi.org/10.1186/s13229-018-0248-y CrossRefPubMedPubMedCentral

Haas, K., Costley, D., Falkmer, M., Richdale, A., Sofronoff, K., & Falkmer, T. (2016). Factors influencing the research participation of adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46(5), 1793–1805. https://doi.org/10.1007/s10803-016-2708-6 CrossRefPubMed

Havdahl, K. A., Hus Bal, V., Huerta, M., Pickles, A., Øyen, A.-S., Stoltenberg, C., & Bishop, S. L. (2016). Multidimensional influences on autism symptom measures: implications for use in etiological research. Journal of the American Academy of Child and Adolescent Psychiatry, 55(12), 1054-1063.e1053. https://doi.org/10.1016/j.jaac.2016.09.490 CrossRefPubMedPubMedCentral

Horner-Johnson, W., & Bailey, D. (2013). Assessing understanding and obtaining consent from adults with intellectual disabilities for a health promotion study. Journal of Policy Pract Intellect Disabil. https://doi.org/10.1111/jppi.12048 CrossRef

Iacono, T., & Carling-Jenkins, R. (2012). The human rights context for ethical requirements for involving people with intellectual disability in medical research. Journal of Intellectual Disability Research, 56(11), 1122–1132. https://doi.org/10.1111/j.1365-2788.2012.01617.x CrossRefPubMed

Jack, A., & Pelphrey, K. A. (2017). Annual Research review: understudied populations within the autism spectrum - current trends and future directions in neuroimaging research. Journal of Child Psychology and Psychiatry, 58(4), 411–435. https://doi.org/10.1111/jcpp.12687 CrossRefPubMed

Kelleher, B., Halligan, T., Garwood, T., Howell, S., Martin-O’Dell, B., Swint, A., & Shin, J. (2020). Brief report: assessment experiences of children with neurogenetic syndromes: caregivers’ perceptions and suggestions for improvement. Journal of Autism and Developmental Disorders, 50(4), 1443–1450. https://doi.org/10.1007/s10803-020-04363-0 CrossRefPubMedPubMedCentral

Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., & Dietz, P. M. (2020). Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1–12. https://doi.org/10.15585/mmwr.ss6904a1 CrossRefPubMedCentral

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.12803 CrossRefPubMed

Maskey, M., Warnell, F., Parr, J. R., Le Couteur, A., & McConachie, H. (2013). Emotional and behavioural problems in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(4), 851–859. https://doi.org/10.1007/s10803-012-1622-9 CrossRefPubMed

McDonald, K. E., Conroy, N. E., & Olick, R. S. (2018). A quantitative study of attitudes toward the research participation of adults with intellectual disability: do stakeholders agree? Disability and Health Journal, 11(3), 345–350. https://doi.org/10.1016/j.dhjo.2017.12.004 CrossRefPubMed

Myers, S. M., Challman, T. D., Bernier, R., Bourgeron, T., Chung, W. K., Constantino, J. N., & Ledbetter, D. H. (2020). Insufficient Evidence for “Autism-Specific” Genes. The American Journal of Human Genetics, 106(5), 587–595. https://doi.org/10.1016/j.ajhg.2020.04.004 CrossRefPubMed

Nordahl, C. W., Mello, M., Shen, A. M., Shen, M. D., Vismara, L. A., Li, D., & Amaral, D. G. (2016). Methods for acquiring MRI data in children with autism spectrum disorder and intellectual impairment without the use of sedation. Journal of Neurodevelopmental Disorders, 8, 20. https://doi.org/10.1186/s11689-016-9154-9 CrossRefPubMedPubMedCentral

Northway, R. (2014). To include or not to include? That is the ethical question. Journal of Intellectual Disabilities, 18(3), 209–210. https://doi.org/10.1177/1744629514543863 CrossRefPubMed

Roberts, T. P. L., Matsuzaki, J., Blaskey, L., Bloy, L., Edgar, J. C., Kim, M., & Embick, D. (2019). Delayed M50/M100 evoked response component latency in minimally verbal/nonverbal children who have autism spectrum disorder. Mol Autism, 10, 34. https://doi.org/10.1186/s13229-019-0283-3 CrossRefPubMedPubMedCentral

Russell, G., Mandy, W., Elliott, D., White, R., Pittwood, T., & Ford, T. (2019). Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis. Mol Autism, 10, 9. https://doi.org/10.1186/s13229-019-0260-x CrossRefPubMedPubMedCentral

Soorya, L., Leon, J., Trelles, M. P., & Thurm, A. (2018). Framework for assessing individuals with rare genetic disorders associated with profound intellectual and multiple disabilities (PIMD): the example of Phelan McDermid Syndrome. The Clinical Neuropsychologist, 32(7), 1226–1255. https://doi.org/10.1080/13854046.2017.1413211 CrossRefPubMed

Spong, C. Y., & Bianchi, D. W. (2018). Improving public health requires inclusion of underrepresented populations in research. JAMA, 319(4), 337–338. CrossRef

Stedman, A., Taylor, B., Erard, M., Peura, C., & Siegel, M. 2018 Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature. J Autism Dev Disord Doi: https://doi.org/10.1007/s10803-018-3844-y

Tager-Flusberg, H., Plesa Skwerer, D., Joseph, R. M., Brukilacchio, B., Decker, J., Eggleston, B., & Yoder, A. (2017). Conducting research with minimally verbal participants with autism spectrum disorder. Autism, 21(7), 852–861. https://doi.org/10.1177/1362361316654605 CrossRefPubMed

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

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.

Yazdani, S., Capuano, A., Ghaziuddin, M., & Colombi, C. (2020). Exclusion criteria used in early behavioral intervention studies for young children with autism spectrum disorder. Brain Science. https://doi.org/10.3390/brainsci10020099 CrossRef

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

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