Literature DB >> 34716842

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

Audrey Thurm1, Alycia Halladay2,3, David Mandell4, Melissa Maye5, Sarah Ethridge6, Cristan Farmer6.   

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.
© 2021. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.

Entities:  

Keywords:  Inclusion; Intellectual Disability; Participation; Research

Mesh:

Year:  2021        PMID: 34716842      PMCID: PMC9054938          DOI: 10.1007/s10803-021-05320-1

Source DB:  PubMed          Journal:  J Autism Dev Disord        ISSN: 0162-3257


  24 in total

1.  Emotional and behavioural problems in children with autism spectrum disorder.

Authors:  Morag Maskey; Frances Warnell; Jeremy R Parr; Ann Le Couteur; Helen McConachie
Journal:  J Autism Dev Disord       Date:  2013-04

2.  Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities.

Authors:  Bea Maes; Sara Nijs; Sien Vandesande; Ines Van Keer; Michael Arthur-Kelly; Juliane Dind; Juliet Goldbart; Geneviève Petitpierre; Annette Van der Putten
Journal:  J Appl Res Intellect Disabil       Date:  2020-10-18

3.  Improving Public Health Requires Inclusion of Underrepresented Populations in Research.

Authors:  Catherine Y Spong; Diana W Bianchi
Journal:  JAMA       Date:  2018-01-23       Impact factor: 56.272

4.  A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

Authors:  Katherine E McDonald; Nicole E Conroy; Robert S Olick
Journal:  Disabil Health J       Date:  2017-12-13       Impact factor: 2.554

5.  The human rights context for ethical requirements for involving people with intellectual disability in medical research.

Authors:  T Iacono; R Carling-Jenkins
Journal:  J Intellect Disabil Res       Date:  2012-11

Review 6.  Framework for assessing individuals with rare genetic disorders associated with profound intellectual and multiple disabilities (PIMD): the example of Phelan McDermid Syndrome.

Authors:  Latha Soorya; Jill Leon; M Pilar Trelles; Audrey Thurm
Journal:  Clin Neuropsychol       Date:  2017-12-21       Impact factor: 3.535

7.  Brief Report: Assessment Experiences of Children with Neurogenetic Syndromes: Caregivers' Perceptions and Suggestions for Improvement.

Authors:  Bridgette Kelleher; Taylor Halligan; Tessa Garwood; Samantha Howell; Breanna Martin-O'Dell; Amber Swint; Liberty-Ann Shelton; Joey Shin
Journal:  J Autism Dev Disord       Date:  2020-04

Review 8.  Annual Research Review: Understudied populations within the autism spectrum - current trends and future directions in neuroimaging research.

Authors:  Allison Jack; Kevin A Pelphrey
Journal:  J Child Psychol Psychiatry       Date:  2017-01-19       Impact factor: 8.982

9.  Methods for acquiring MRI data in children with autism spectrum disorder and intellectual impairment without the use of sedation.

Authors:  Christine Wu Nordahl; Melissa Mello; Audrey M Shen; Mark D Shen; Laurie A Vismara; Deana Li; Kayla Harrington; Costin Tanase; Beth Goodlin-Jones; Sally Rogers; Leonard Abbeduto; David G Amaral
Journal:  J Neurodev Disord       Date:  2016-05-05       Impact factor: 4.025

10.  Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis.

Authors:  Ginny Russell; William Mandy; Daisy Elliott; Rhianna White; Tom Pittwood; Tamsin Ford
Journal:  Mol Autism       Date:  2019-03-01       Impact factor: 7.509

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