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Cited by 419Autism Spectrum Disorder ResearchPatient-Provider Communication in HealthcareDown syndrome and intellectual disability research

Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership

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Nicolaidis, Christina, Raymaker, Dora, McDonald, Katherine, Dern, Sebastian, Boisclair, W. Cody, Ashkenazy, Elesia, Baggs, Amanda·2013·Journal of General Internal Medicine
DOI 10.1007/s11606-012-2262-7PMC PMC3663938
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Abstract

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 parent-mediated interventions coach parents to become more attuned to child communication signals and facilitate joint engagement in play and everyday activities, designed to increase social and communication skills.

    “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]

    The Discussion addresses accommodations in healthcare for autistic adults, and Data Collection describes a survey of patient–provider communication; neither addresses parent-mediated interventions for children. Searches for parent coaching, child communication signals, and joint engagement found no relevant passage in our copy. No page numbers were provided for these sections. (LLM, conf=0.78)

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  • A narrative synthesis was undertaken following Economic and Social Research Council guidelines.

    “A narrative synthesis was undertaken following Economic and Social Research Council guidelines.30”

    From Approaches to improving mental healthcare for autistic people: Systematic review (2024) · cites this paper as [30]

    The Methods and Community-Based Participatory Research Approach sections describe an online survey and a participatory research process, not a narrative synthesis. Searches for narrative synthesis and Economic and Social Research Council guidelines found no passage in our copy addressing the cited claim; page numbers were unavailable. (LLM, conf=0.76)

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  • Communication is a significant barrier for people with autism and/or intellectual disabilities.

    “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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2 of the 65 references couldn’t be matched to a known paper.

Research works printed but not linked: 3

  1. Diab ME, Johnston MV. Relationships between level of disability and receipt of preventive health services. Arch Phys Med Rehabil. 2004;85 (5):749-57.
  2. Biever C. Web removes social barriers for those with autism. New Scientist. 2007;2610:26-7.
  3. Nicolaidis C, Raymaker D, McDonald K, et al. Collaboration strategies in non-traditional CBPR partnerships: lessons from an academic- community partnership with autistic self-advocates. Progress in Com- munity Health Partnerships: Research, Education, and Action. In press.

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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
ORCID
Venue
Journal of General Internal Medicine
Publisher
Springer Science and Business Media LLC
Published
2012-11-21
Volume
28
Issue
6
Pages
761-769
ISSN
  • 0884-8734 (ISSN-L)
  • 1525-1497
DOI
10.1007/s11606-012-2262-7
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
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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