Journal of General Internal Medicine

, Volume 28, Issue 6, pp 761–769 | Cite as

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

  • Christina NicolaidisEmail author
  • Dora RaymakerEmail author
  • Katherine McDonald
  • Sebastian Dern
  • W. Cody Boisclair
  • Elesia Ashkenazy
  • Amanda Baggs
Original Research



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.


To compare the healthcare experiences of autistic and non-autistic adults via an online survey.


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.


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).


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.


community-based participatory research autism healthcare disparities disability 




We would like to thank Gateway Project investigators Morton Ann Gernsbacher, PhD and Jennifer Stevenson, PhD, for their collaboration on the Gateway Project and their review of the healthcare study materials and publications. We would like to thank Roberta Delaney, Dean Westwood, MS, and the Oregon Institute on Disability and Development (OIDD) Community Partners Council (including Rhonda Way, Emily Holmes, Jerry Pattee, and Judy Cunio) for their help with study development and recruitment efforts. We would also like to thank the Autistic Self-Advocacy Network for their help with recruitment and dissemination, and Martha Gerrity, MD, MPH, for her review of this manuscript.


This project was funded by the Oregon Clinical and Translational Research Institute (OCTRI), grant number UL1 RR024140 from the National Center for Research Resources (NCRR), a component of the National Institutes of Health (NIH), and NIH Roadmap for Medical Research. The Gateway Project is funded by the Vilas Trust Fund.

Conflict of Interest

None of the authors have any potential conflicts of interest to disclose.

Prior Presentations

Preliminary results from this study have been presented at the Family Medicine Education Consortium NE Region Meeting & Residency Fair (Hershey, PA, October, 2010), the Society of General Internal Medicine Annual Meeting (Phoenix, Arizona, May, 2011), Developmental Disabilities: Update for Health Professionals (San Francisco, CA, March, 2011), the Scientific Meeting for Autism Spectrum Conditions (WTAS, Berlin, Germany, February, 2011), and Oregon Health & Sciences University Psychiatry Grand Rounds (Portland, OR, March, 2011).


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Copyright information

© Society of General Internal Medicine 2012

Authors and Affiliations

  • Christina Nicolaidis
    • 1
    Email author
  • Dora Raymaker
    • 1
    • 2
    Email author
  • Katherine McDonald
    • 3
  • Sebastian Dern
    • 4
  • W. Cody Boisclair
    • 4
  • Elesia Ashkenazy
    • 2
  • Amanda Baggs
    • 4
  1. 1.Departments of Medicine and Public Health & Preventive MedicineOregon Health & Science UniversityPortlandUSA
  2. 2.Autistic Self Advocacy NetworkWashingtonUSA
  3. 3.Department of Public Health, Food Studies & Nutrition and the Burton Blatt InstituteSyracuse UniversitySyracuseUSA
  4. 4.AASPIRE Community Partner at LargePortlandUSA

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