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Autistic adults have poorer quality healthcare and worse health based on self-report data.

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cam.issuedOnline2022-05-26
dc.contributor.authorWeir, Elizabeth
dc.contributor.authorAllison, Carrie
dc.contributor.authorBaron-Cohen, Simon
dc.contributor.orcidWeir, Elizabeth [0000-0001-5434-9193]
dc.contributor.orcidAllison, Carrie [0000-0003-2272-2090]
dc.contributor.orcidBaron-Cohen, Simon [0000-0001-9217-2544]
dc.date.accessioned2022-06-29T19:47:23Z
dc.date.available2022-06-29T19:47:23Z
dc.date.issued2022-05-26
dc.date.updated2022-06-29T19:47:23Z
dc.descriptionFunder: Corbin Charitable Trust
dc.descriptionFunder: Medical Research Council
dc.descriptionFunder: NIHR Collaboration for Leadership in Applied Health Research and Care - East of England
dc.descriptionFunder: Templeton World Charity Foundation
dc.descriptionFunder: NIHR Biomedical Research Centre
dc.descriptionFunder: Queen Anne's Gate Foundation
dc.descriptionFunder: Simons Foundation Autism Research Initiative
dc.description.abstractBACKGROUND: Recent research suggests that autistic individuals have shorter lifespans and experience worse health (greater health burden) than non-autistic individuals. Small, qualitative studies suggest that autistic adults also experience poor self-reported healthcare quality. METHODS: An anonymized, cross-sectional, self-report questionnaire was administered to n = 4158 individuals. The study assessed prevalence of chronic health conditions, healthcare quality, differences in overall health inequality score, and effects of the coronavirus pandemic on healthcare quality. We used Fisher's exact tests, binomial logistic regression, and predictive machine learning tools, as appropriate. RESULTS: The final sample included n = 2649 participants (n = 1285 autistic) aged 16-96 years. Autistic adults reported lower quality healthcare than non-autistic adults across 50/51 items, including poorer access to healthcare and poorer communication, alongside increased anxiety, sensory sensitivity, system-level problems, shutdowns, and meltdowns. Differences between groups were stark: aggregated health inequality scores predicted autism diagnosis, even after stratifying by sex. Autistic adults were also more likely to have chronic health conditions than non-autistic adults. There were no significant differences in healthcare quality for autistic adults before and during the pandemic, although they received relatively poorer quality healthcare than non-autistic adults across both periods. LIMITATIONS: The study's sampling methods are not likely to capture the perspectives of all autistic individuals, especially those with intellectual disability. Both the autistic and control samples are biased towards UK residents, white individuals, those assigned female at birth, and those who completed an undergraduate degree or higher education. As such, these results may limit their generalizability to other groups. Finally, these results relate to self-reported differences in healthcare quality between autistic and non-autistic adults. The observed group differences may in part reflect differences in perception and communication rather than differences in actual healthcare quality. CONCLUSIONS: Autistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic; unfortunately, they existed before and have persisted after the onset of the coronavirus pandemic.
dc.identifier.doi10.17863/CAM.85953
dc.identifier.eissn2040-2392
dc.identifier.issn2040-2392
dc.identifier.other35619147
dc.identifier.otherPMC9135388
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/338540
dc.languageeng
dc.language.isoeng
dc.publisherSpringer Science and Business Media LLC
dc.publisher.urlhttp://dx.doi.org/10.1186/s13229-022-00501-w
dc.rightsAttribution 4.0 International
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.sourceessn: 2040-2392
dc.sourcenlmid: 101534222
dc.subjectAdult
dc.subjectAutistic Disorder
dc.subjectCross-Sectional Studies
dc.subjectDelivery of Health Care
dc.subjectFemale
dc.subjectHealth Status Disparities
dc.subjectHumans
dc.subjectInfant, Newborn
dc.subjectSelf Report
dc.titleAutistic adults have poorer quality healthcare and worse health based on self-report data.
dc.typeArticle
dcterms.dateAccepted2022-05-13
prism.issueIdentifier1
prism.publicationNameMol Autism
prism.volume13
pubs.funder-project-idWellcome Trust (102199/Z/13/Z)
pubs.funder-project-idWellcome Trust (214322/Z/18/Z)
rioxxterms.licenseref.urihttps://creativecommons.org/licenses/by/4.0/
rioxxterms.versionVoR
rioxxterms.versionofrecord10.1186/s13229-022-00501-w

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