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Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership
Open accessAbstract
Background Little is known about the healthcare experiences of adults on the autism spectrum. Moreover, autistic adults have rarely been included as partners in autism research.Objective To compare the healthcare experiences of autistic and non-autistic adults via an online survey.Methods We used a community-based participatory research (CBPR) approach to adapt survey instruments to be accessible to autistic adults and to conduct an online cross-sectional survey. We assessed preliminary psychometric data on the adapted scales. We used multivariate analyses to compare healthcare experiences of autistic and non-autistic participants.Results Four hundred and thirty-seven participants completed the survey (209 autistic, 228 non-autistic). All adapted scales had good to excellent internal consistency reliability (alpha 0.82-0.92) and strong construct validity. In multivariate analyses, after adjustment for demographic characteristics, health insurance, and overall health status, autistic adults reported lower satisfaction with patient-provider communication (beta coefficient -1.9, CI -2.9 to -0.9), general healthcare self-efficacy (beta coefficient -11.9, CI -14.0 to -8.6), and chronic condition self-efficacy (beta coefficient -4.5, CI -7.5 to -1.6); higher odds of unmet healthcare needs related to physical health (OR 1.9 CI 1.1-3.4), mental health (OR 2.2, CI 1.3-3.7), and prescription medications (OR 2.8, CI 2.2-7.5); lower self-reported rates of tetanus vaccination (OR 0.5, CI 0.3-0.9) and Papanicolaou smears (OR 0.5, CI 0.2-0.9); and greater odds of using the emergency department (OR 2.1, CI 1.8-3.8).Conclusion A CBPR approach may facilitate the inclusion of people with disabilities in research by increasing researchers' ability to create accessible data collection instruments. Autistic adults who use the Internet report experiencing significant healthcare disparities. Efforts are needed to improve the healthcare of autistic individuals, including individuals who may be potentially perceived as having fewer disability-related needs.
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“Lower-intensity approaches include parent-mediated interventions whereby parents are coached to become more attuned to their child's communication signals and style (which are considered an intermediate child outcome) and to facilitate more joint engagement in play and everyday activities, designed to increase social and communication skills in the child 175 .”
From Autism spectrum disorder (2020) · cites this paper as [175]
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From Approaches to improving mental healthcare for autistic people: Systematic review (2024) · cites this paper as [30]
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“Communication is a significant barrier for people with autism and/or intellectual disabilities.29,38–42”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [42]
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Self-citation
Metadata
- Authors
- Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A.
- Affiliations
- Oregon Health & Science University (US)
- Syracuse University (US)
- Corresponding author
- Nicolaidis, Christina
- Raymaker, Dora
- Venue
- Journal of General Internal Medicine
- Published
- 2012-11-21
- Volume
- 28
- Issue
- 6
- Pages
- 761-769
- ISSN
- 0884-8734 (ISSN-L)
- 1525-1497
- PMC
- PMC3663938
- OpenAlex
- W1999004010
- Cited by
- 419
- References
- 65
- Citations by year
- 2026: 32 · 2025: 35 · 2024: 47 · 2023: 47 · 2022: 40 · 2021: 58 · 2020: 36 · 2019: 29 · 2018: 22 · 2017: 17 · 2016: 22 · 2015: 11 · 2014: 14 · 2013: 7
- FWCI
- 5.24
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of General Internal Medicine (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- PDXScholar (Portland State University) (submittedVersion)
- Funders
- National Institutes of Health (UL1TR000128, RR024140)
- Oregon Clinical and Translational Research Institute (UL1RR024140, RR024140)
- National Center for Research Resources (UL1RR024140)
- National Center for Advancing Translational Sciences
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Keywords
- autistic adults, patient experience, patient-provider communication, unmet health needs, mental health services, physical health care, vaccination, emergency department utilization, health care disparities, community-based participatory research
- MeSH terms
- Academic Medical Centers, Adult, Attitude to Health, Autistic Disorder, Cross-Sectional Studies, Female, Humans, Male, Middle Aged, Online Systems, Professional-Patient Relations, Psychometrics, Socioeconomic Factors, United States, Patient Satisfaction, Health Care Surveys, Self Efficacy, Needs Assessment, Healthcare Disparities, Community-Based Participatory Research, Young Adult
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