Understanding disability in healthcare: exploring the perceptions of parents of young people with autism spectrum disorder Article Swipe
Simone Wright Stein
,
R Vaccaro Alexander
,
Jotvarinder Mann
,
Cory Schneider
,
Sophie Zhang
,
Barbara E. Gibson
,
Sharon Gabison
,
Patrick Jachyra
,
Donya Mosleh
·
YOU?
·
· 2021
· Open Access
·
· DOI: https://doi.org/10.1080/09638288.2021.1948114
YOU?
·
· 2021
· Open Access
·
· DOI: https://doi.org/10.1080/09638288.2021.1948114
Purpose: How autism spectrum disorder (ASD) is understood (i.e., as a medical problem or natural human variation) has profound implications for how healthcare services are designed and delivered. As the recipients of these services, children and families are highly invested in these debates, yet little research has sought to investigate their views. The purpose of this study was to explore parents' conceptualizations of ASD in relation to disability, and how they align with, or diverge from, conceptualizations they encounter within healthcare.Materials and methods: Nine semi-structured qualitative interviews were conducted with parents of children with ASD and thematically analyzed.Results: The accounts suggested that participants integrated multiple and sometimes contradictory conceptualizations of disability that reflected both "medical" and "social" models and sources of disablement. While the participants often advocated for acceptance and inclusion of their child, the label of "neurodiversity" was commonly rejected due to the concern for potential loss of funding for services.Conclusions: Study findings highlight the relationship between how parents conceptualize ASD and their experiences accessing supportive services within current delivery structures. Implications for ASD service providers emphasize accommodating parents' unique and evolving values and priorities for healthcare and their relation to current service systems.Implications for RehabilitationParents conceptualizations of ASD both inform and are influenced by their experiences of accessing supportive services.This study highlights that parents' perspectives are fluid, context-dependent, and do not exclusively represent a single model or perspective of disability.To meet family needs, service providers including healthcare professionals must recognize parents' unique understandings of their child's ASD and appreciate how healthcare shapes these perceptions.
Related Topics
Concepts
Autism spectrum disorder
Context (archaeology)
Psychology
Perception
Inclusion (mineral)
Qualitative research
Perspective (graphical)
Health care
Service provider
Autism
Service delivery framework
Social model of disability
Developmental psychology
Service (business)
Psychiatry
Social psychology
Sociology
Neuroscience
Computer science
Artificial intelligence
Biology
Economy
Economics
Social science
Paleontology
Economic growth
Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1080/09638288.2021.1948114
- OA Status
- gold
- Cited By
- 17
- References
- 36
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W3178539042
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W3178539042Canonical identifier for this work in OpenAlex
- DOI
-
https://doi.org/10.1080/09638288.2021.1948114Digital Object Identifier
- Title
-
Understanding disability in healthcare: exploring the perceptions of parents of young people with autism spectrum disorderWork title
- Type
-
articleOpenAlex work type
- Language
-
enPrimary language
- Publication year
-
2021Year of publication
- Publication date
-
2021-07-07Full publication date if available
- Authors
-
Simone Wright Stein, R Vaccaro Alexander, Jotvarinder Mann, Cory Schneider, Sophie Zhang, Barbara E. Gibson, Sharon Gabison, Patrick Jachyra, Donya MoslehList of authors in order
- Landing page
-
https://doi.org/10.1080/09638288.2021.1948114Publisher landing page
- Open access
-
YesWhether a free full text is available
- OA status
-
goldOpen access status per OpenAlex
- OA URL
-
https://durham-repository.worktribe.com/output/1239041Direct OA link when available
- Concepts
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Autism spectrum disorder, Context (archaeology), Psychology, Perception, Inclusion (mineral), Qualitative research, Perspective (graphical), Health care, Service provider, Autism, Service delivery framework, Social model of disability, Developmental psychology, Service (business), Psychiatry, Social psychology, Sociology, Neuroscience, Computer science, Artificial intelligence, Biology, Economy, Economics, Social science, Paleontology, Economic growthTop concepts (fields/topics) attached by OpenAlex
- Cited by
-
17Total citation count in OpenAlex
- Citations by year (recent)
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2025: 8, 2024: 6, 2023: 2, 2022: 1Per-year citation counts (last 5 years)
- References (count)
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36Number of works referenced by this work
- Related works (count)
-
10Other works algorithmically related by OpenAlex
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| abstract_inverted_index.investigate | 49 |
| abstract_inverted_index.perspective | 229 |
| abstract_inverted_index.qualitative | 85 |
| abstract_inverted_index.structures. | 171 |
| abstract_inverted_index.Implications | 172 |
| abstract_inverted_index.disablement. | 121 |
| abstract_inverted_index.implications | 19 |
| abstract_inverted_index.methods:</b> | 82 |
| abstract_inverted_index.participants | 102, 124 |
| abstract_inverted_index.perceptions. | 255 |
| abstract_inverted_index.perspectives | 216 |
| abstract_inverted_index.relationship | 156 |
| abstract_inverted_index.thematically | 96 |
| abstract_inverted_index.accommodating | 178 |
| abstract_inverted_index.conceptualize | 160 |
| abstract_inverted_index.contradictory | 107 |
| abstract_inverted_index.disability.To | 231 |
| abstract_inverted_index.professionals | 239 |
| abstract_inverted_index.services.This | 211 |
| abstract_inverted_index.understandings | 244 |
| abstract_inverted_index.<b>Purpose:</b> | 0 |
| abstract_inverted_index.semi-structured | 84 |
| abstract_inverted_index."neurodiversity" | 137 |
| abstract_inverted_index.conceptualizations | 61, 76, 108, 197 |
| abstract_inverted_index.context-dependent, | 219 |
| abstract_inverted_index.systems.Implications | 194 |
| abstract_inverted_index.RehabilitationParents | 196 |
| abstract_inverted_index.healthcare.<b>Materials | 80 |
| abstract_inverted_index.analyzed.<b>Results:</b> | 97 |
| abstract_inverted_index.services.<b>Conclusions:</b> | 151 |
| cited_by_percentile_year.max | 99 |
| cited_by_percentile_year.min | 89 |
| corresponding_author_ids | https://openalex.org/A5002168958 |
| countries_distinct_count | 2 |
| institutions_distinct_count | 9 |
| corresponding_institution_ids | https://openalex.org/I185261750, https://openalex.org/I2799838188, https://openalex.org/I2801420703 |
| sustainable_development_goals[0].id | https://metadata.un.org/sdg/10 |
| sustainable_development_goals[0].score | 0.7599999904632568 |
| sustainable_development_goals[0].display_name | Reduced inequalities |
| citation_normalized_percentile.value | 0.81764807 |
| citation_normalized_percentile.is_in_top_1_percent | False |
| citation_normalized_percentile.is_in_top_10_percent | False |