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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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.
KEY WORDScommunity-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.
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).
- 1.Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee. 2010 IACC Autism Spectrum Disorder research portfolio analysis report. Washington, DC July 2012.Google Scholar
- 2.Sinclair J. Why I dislike “person first” language. http://web.archive.org/web/20080616063934/http://web.syr.edu/∼jisincla/person_first.htm. Accessed October 10, 2012.
- 5.Durvasula SBH. Health inequalities in people with intellectual disability: strategies for improvement. Health Promot J Aust. 2001;11:27–31.Google Scholar
- 6.Janicki MP, Dalton AJ, Henderson CM, Davidson PW. Mortality and morbidity among older adults with intellectual disability: health services considerations. Disabil Rehabil. 1999;5(6):284–94.Google Scholar
- 9.Lewis MA, Lewis CE, Leake B, King BH. The quality of health care for adults with developmental disabilities. Public Health Rep (1974-). 2002;174–84.Google Scholar
- 11.Coughlin TA, Long SK, Kendall S. Health care access, use, and satisfaction among disabled Medicaid beneficiaries. Health Care Financing Rev. 2002;24(2):115–36.Google Scholar
- 18.Chau N. More than ramps. a guide to improving healthcare quality and access for people with disabilities. Br Med J. 2007;61(4):367–367.Google Scholar
- 27.Robertson S. Information technology & the autistic culture: Influences, empowerment, & progression of IT usage in advocacy initiatives. Paper presented at: Autreat; June, 2007, 2007; Pennsylvania, PA.Google Scholar
- 28.Biever C. Web removes social barriers for those with autism. New Scientist. 2007;2610:26–7.Google Scholar
- 29.Murray D, Aspinall A, Getting IT. Using information technology to empower people with communication difficulties. London: Jessica Kingsely Publishers; 2006.Google Scholar
- 30.Blume, H. Autistics are communicating in cyberspace. http://www.nytimes.com/library/cyber/techcol/063097techcol.html. Accessed October 10, 2012.
- 32.Viswanathan M, Ammerman A, Eng E, et al. Community-based participatory research: Assessing the evidence. Rockville, MD: Agency for Healthcare Research and Quality July 2004. Evidence Report/Technology Assessment Number 99.Google Scholar
- 33.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 Community Health Partnerships: Research, Education, and Action. In press.Google Scholar
- 34.Bureau USC. Disability Status: 2000 Census Brief 2003.Google Scholar
- 36.Baron-Cohen S, Wheelwright S, Skinner R, Martin J, Clubley E. The autism-spectrum quotient (AQ): evidence from Asperger syndrome/high-functioning autism, males and females, scientists and mathematicians.[erratum appears in J Autism Dev Disord 2001 Dec;31(6):603]. J Autism Dev Disord. 2001;31(1):5–17.PubMedCrossRefGoogle Scholar
- 37.Cantor D, Covell, J., Davis, T., Park, I., & Rizzo, L. Health Information National Trends Survey (HINTS). http://hints.cancer.gov/docs/HINTS2007FinalReport.pdf. Accessed October 10, 2012.
- 41.Smith SG, Wolf MS, von Wagner C. Socioeconomic status, statistical confidence, and patient-provider communication: an analysis of the Health Information National Trends Survey (HINTS 2007). J Heal Commun.15 Suppl 3:169–85.Google Scholar
- 43.Lorig K, Stewart A, Ritter P, Gonzalez V, Laurent D, Lynch J. Outcome measures for health education and other health care interventions. Thousand Oaks: Sage Publications; 1996.Google Scholar
- 44.Blackwell, D., Gentleman, J., Martin, M., Ng, E.,Sanmartin, C., Simile, C. Joint Canada/United States Survey of Health: Findings and Public-use Microdata File. http://www.statcan.gc.ca/pub/82m0022x/2003001/pdf/4228656-eng.pdf. Accessed 02/25/2009.
- 46.Pleis JR, Lucas JW. Summary health statistics for U.S. adults: National Health Interview Survey, 2007. Vital Health Stat—Series 10: Data From the National Health Survey. 2009;240:1–159.Google Scholar
- 47.CDC. National Health Interview Survey (NHIS)—Adult access to health care & utilization. http://www.ihis.us/ihis/resources/surveys_pdf/survey_form_ih2007_fam.pdf. Accessed October 10, 2012.
- 48.Ware JE, GlaxoSmithKline. How to score and interpret single-item health status measures: a manual for users of the of the SF-8 health survey:(with a supplement on the SF-6 health survey): QualityMetric, Inc.; 2001.Google Scholar
- 54.Ham M, Jones N, Mansell I, Northway R, Price L, Walker G. ‘I’m a researcher!’ working together to gain ethical approval for a participatory research study. J Learn Disabil. 2004;8(4):397–407.Google Scholar
- 58.U.S. Department of Health and Human Services. The Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2020. About Health People: Disparities. http://www.healthypeople.gov/2020/about/disparitiesAbout.aspx. Accessed July 10, 2012.
- 59.Bruder MB, Kerins G, Mazzarella C, Sims J, Stein N. Brief report: the medical care of adults with autism spectrum disorders: identifying the needs. J Autism Dev Disord. 2012;42(11):2498–504.Google Scholar
- 63.American Psychiatric Association. DSM-5 proposed criteria for autism spectrum disorder designed to provide more accurate diagnosis and treatment. January 20, 2012. http://www.dsm5.org/Documents/12-03%20Autism%20Spectrum%20Disorders%20-%20DSM5.pdf. Accessed July 10, 2012.
- 64.American Psychiatric Association. DSM-5 Development: A 05 Autism Spectrum Disorder—Rationale. http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94#. Accessed July 10, 2012.