Making Research Possible: Barriers and Solutions For Those With ASD and ID
Open accessAbstract
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.
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Beyond specific genetic syndromes such as FXS, there is little research on sex/gender effects in intellectual disabilities, which is also reflected in the autism literature insofar as autistic people with intellectual disabilities are disproportionately under-represented.
“Beyond specific genetic syndromes (for example, FXS), there is little research on sex/gender effects in intellectual disabilities, which is also reflected in the autism literature insofar as autistic people with intellectual disabilities are disproportionately under-represented304,305.”
From Sex and gender in neurodevelopmental conditions (2023) · cites this paper as [305]
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Research works printed but not linked: 1
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Cited by
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Sex and gender in neurodevelopmental conditions
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- Authors
- Thurm, A., Halladay, A., Mandell, D., Maye, M., Ethridge, S., & Farmer, C.
- Affiliations
- National Institute of Mental Health (US)
- Rutgers, The State University of New Jersey (US)
- University of Pennsylvania (US)
- Henry Ford Health (US)
- Corresponding author
- Thurm, Audrey
- Venue
- Journal of Autism and Developmental Disorders
- Published
- 2021-10-30
- Volume
- 52
- Issue
- 10
- Pages
- 4646-4650
- ISSN
- 0162-3257 (ISSN-L)
- 1573-3432
- PMC
- PMC9054938
- OpenAlex
- W3208585137
- Cited by
- 52
- References
- 27
- Citations by year
- 2026: 16 · 2025: 14 · 2024: 11 · 2023: 8 · 2022: 3
- FWCI
- 2.89
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Autism and Developmental Disorders (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- Autism Science Foundation
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Social Sciences › Safety Research › Disability Rights and Representation
- Keywords
- autism spectrum disorder, intellectual disability, research participation, barriers to research participation, inclusive research, underrepresentation in research, research disparities, cognitive disability
- MeSH terms
- Autism Spectrum Disorder, Humans, Intellectual Disability, Caregivers
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