Skip to main content

Advertisement

SpringerLink
Log in

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

  • Original Research
  • Published:
Journal of General Internal Medicine Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
$34.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Explore related subjects

Discover the latest articles, news and stories from top researchers in related subjects.

REFERENCES

  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.

  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.

  3. Nicolaidis C, Raymaker D, McDonald K, et al. Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic-community partnership with autistic self-advocates. Prog Community Health Partnersh. 2011;5(2):143–50.

    Article  PubMed  Google Scholar 

  4. Krahn GL, Hammond L, Turner A. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12(1):70–82.

    Article  PubMed  Google Scholar 

  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 

  7. Lishner DM, PhD MR, Levine P, Patrick D. Access to primary health care among persons with disabilities in rural areas: a summary of the literature. J Rural Heal. 1996;12(1):45–53.

    Article  CAS  Google Scholar 

  8. Sullivan WF, Heng J, Cameron D, et al. Consensus guidelines for primary health care of adults with developmental disabilities. Canadian Family Physician. 2006;52(11):1410.

    PubMed  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.

  10. Wei W, Findley PA, Sambamoorthi U. Disability and receipt of clinical preventive services among women. Women’s Health Issues. 2006;16(6):286–96.

    Article  PubMed  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 

  12. Wan TTH, Arling G. Differential use of health services among disabled elderly. Res Aging. 1983;5(3):411.

    Article  Google Scholar 

  13. Diab ME, Johnston MV. Relationships between level of disability and receipt of preventive health services. Arch Phys Med Rehabil. 2004;85(5):749–57.

    Article  PubMed  Google Scholar 

  14. Havercamp SM, Scandlin D, Roth M. Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina. Public Health Rep. 2004;119(4):418–26.

    Article  PubMed  Google Scholar 

  15. Ramirez A, Farmer GC, Grant D, Papachristou T. Disability and preventive cancer screening: results from the 2001 California Health Interview Survey. Am J Public Health. 2005;95(11):2057–64.

    Article  PubMed  Google Scholar 

  16. Reynolds F, Stanistreet D, Elton P. Women with learning disabilities and access to cervical screening: retrospective cohort study using case control methods. BMC Publ Health. 2008;8(1):30.

    Article  Google Scholar 

  17. Burns TJ, Batavia AI, Smith QW, DeJong G. Primary health care needs of persons with physical disabilities: what are the research and service priorities? Arch Phys Med Rehabil. 1990;71(2):138–43.

    PubMed  CAS  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 

  19. Rimmer JH, Braddock D. Health promotion for people with physical, cognitive, and sensory disabilities: an emerging national priority. Am J Heal Promot. 2002;16(4):220–4.

    Article  Google Scholar 

  20. Becker H, Stuifbergen A, Tinkle M. Reproductive health care experiences of women with physical disabilities: a qualitative study. Arch Phys Med Rehabil. 1997;78(12S5):26–33.

    Article  Google Scholar 

  21. Tyler CV, Schramm SC, Karafa M, Tang AS, Jain AK. Chronic disease risks in young adults with autism spectrum disorder: forewarned is forearmed. Am J Intellect Dev Disabil. 2011;116(5):371–80.

    Article  PubMed  Google Scholar 

  22. Chakrabarti S, Fombonne E. Pervasive developmental disorders in preschool children: confirmation of high prevalence. Am J Psychiatry. 2005;162(6):1133–41.

    Article  PubMed  Google Scholar 

  23. Chakrabarti S, Fombonne E. Pervasive developmental disorders in preschool children. JAMA. 2001;285(24):3093–9.

    Article  PubMed  CAS  Google Scholar 

  24. Williams E, Thomas K, Sidebotham H, Emond A. Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort. Dev Med Child Neurol. 2008;50(9):672–7.

    Article  PubMed  Google Scholar 

  25. Keen D, Ward S. Autistic spectrum disorder: a child population profile. Autism. 2004;8(1):39–48.

    Article  PubMed  Google Scholar 

  26. Jordan CJ. Evolution of autism support and understanding via the World Wide Web. Intellect Dev Disabil. 2010;48(3):220–7.

    Article  PubMed  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.

  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.

  31. Jones L, Wells K. Strategies for academic and clinician engagement in community-participatory partnered research.[see comment]. JAMA. 2007;297(4):407–10.

    Article  PubMed  CAS  Google Scholar 

  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.

  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.

  34. Bureau USC. Disability Status: 2000 Census Brief 2003.

  35. Woodbury-Smith MR, Robinson J, Wheelwright S, Baron-Cohen S. Screening adults for Asperger Syndrome using the AQ: a preliminary study of its diagnostic validity in clinical practice. J Autism Dev Disord. 2005;35(3):331–5.

    Article  PubMed  CAS  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.

    Article  PubMed  CAS  Google 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.

  38. Hong T. Internet health information in the patient-provider dialogue. CyberPsychology Behav. 2008;5:587–9.

    Article  Google Scholar 

  39. Marks R, Ok H, Joung H, Allegrante JP. Perceptions about collaborative decisions: perceived provider effectiveness among 2003 and 2007 Health Information National Trends Survey (HINTS) respondents. J Heal Commun. 2010;15(Suppl 3):135–46.

    Article  Google Scholar 

  40. Ok H, Marks R, Allegrante JP. Perceptions of health care provider communication activity among American cancer survivors and Adults Without Cancer Histories: an analysis of the 2003 Health Information Trends Survey (HINTS) Data. J Health Commun. 2008;13(7):637–53.

    Article  PubMed  Google Scholar 

  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.

  42. Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of a self-management program on patients with chronic disease. Eff Clin Pract. 2001;4(6):256–62.

    PubMed  CAS  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.

  45. Sanmartin C, Berthelot J-M, Ng E, et al. Comparing health and health care use in Canada and the United States. Health Aff. 2006;25(4):1133–42.

    Article  Google Scholar 

  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.

  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.

  49. Emerson E, Graham H, Hatton C. The measurement of poverty and socioeconomic position in research involving people with intellectual disability. Int Rev Res Ment Retard. 2006;32:77–108.

    Article  Google Scholar 

  50. Wing L, Potter D. The epidemiology of autistic spectrum disorders: is the prevalence rising? Ment Retard Dev Disabil Res Rev. 2002;8(3):151–61.

    Article  PubMed  Google Scholar 

  51. Koch T, Marks J, Tooke E. Evaluating a community nursing service: listening to the voices of clients with an intellectual disability and/or their proxies. J Clin Nurs. 2001;10(3):352–63.

    Article  PubMed  CAS  Google Scholar 

  52. Aman MGHB. Reactions to “ethical challenges and complexities of including people with intellectual disability as participants in research” by dr teresa lacono. J Intellect Dev Disabil. 2006;31(3):180–2.

    Article  Google Scholar 

  53. Kottorp A, Bernspang B, Fisher AG. Validity of a performance assessment of activities of daily living for people with developmental disabilities. J Intellect Disabil Res. 2003;47(Pt 8):597–605.

    Article  PubMed  CAS  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 

  55. McVilly K, Dalton AJ. Commentary on lacono (2006): “ethical challenges and complexities of including people with intellectual disability as participants in research”. J Intellect Dev Disabil. 2006;31(3):186–8.

    Article  Google Scholar 

  56. Braveman P. Health disparities and health equity: concepts and measurement. Annu Rev Public Health. 2006;27:167–94.

    Article  PubMed  Google Scholar 

  57. Carter-Pokras O, Baquet C. What is a“ health disparity”? Public Health Rep. 2002;117(5):426.

    PubMed  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 

  60. Sax LJ, Gilmartin SK, Bryant AN. Assessing response rates and nonresponse bias in web and paper surveys. Res High Educ. 2003;44(4):409–32.

    Article  Google Scholar 

  61. Rhodes SD, Bowie DA, Hergenrather KC. Collecting behavioural data using the world wide web: considerations for researchers. J Epidemiol Community. 2003;57(1):68–73.

    Article  CAS  Google Scholar 

  62. Shattuck PT, Wagner M, Narendorf S, Sterzing P, Hensley M. Post-high school service use among young adults with an autism spectrum disorder. Arch Pediatr Adolesc Med. 2011;165(2):141–6.

    Article  PubMed  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.

  65. Mattila M-L, Kielinen M, Linna S-L, et al. Autism spectrum disorders according to DSM-IV-TR and comparison with DSM-5 draft criteria: an epidemiological study. J Am Acad Child Adolesc Psychiatr. 2011;50(6):583–92.e511.

    Article  Google Scholar 

  66. McPartland JC, Reichow B, Volkmar FR. Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder. J Am Acad Child Adolesc Psychiatr. 2012;51(4):368–83.

    Article  Google Scholar 

Download references

Acknowledgements

Contributors

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.

Funders

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).

Author information

Authors and Affiliations

  1. Departments of Medicine and Public Health & Preventive Medicine, Oregon Health & Science University, L475; 3181 SW Sam Jackson Park Road, Portland, OR, 97239, USA

    Christina Nicolaidis MD, MPH & Dora Raymaker MS

  2. Autistic Self Advocacy Network, Washington, DC, USA

    Dora Raymaker MS & Elesia Ashkenazy

  3. Department of Public Health, Food Studies & Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY, USA

    Katherine McDonald PhD

  4. AASPIRE Community Partner at Large, Portland, USA

    Sebastian Dern, W. Cody Boisclair PhD & Amanda Baggs

Authors
  1. Christina Nicolaidis MD, MPH
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Dora Raymaker MS
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Katherine McDonald PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Sebastian Dern
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. W. Cody Boisclair PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Elesia Ashkenazy
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Amanda Baggs
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding authors

Correspondence to Christina Nicolaidis MD, MPH or Dora Raymaker MS.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Nicolaidis, C., Raymaker, D., McDonald, K. et al. Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership. J GEN INTERN MED 28, 761–769 (2013). https://doi.org/10.1007/s11606-012-2262-7

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11606-012-2262-7

KEY WORDS

Search

Navigation