A recent paper addresses an issue I personally have considered very important and understudied: health care delivery for autistics. The current paper is: Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership (pubmed link, full paper at AASPIRE).
From the AASPIRE press release:
AASPIRE Co-Director and principle investigator of the study, Dr. Christina Nicolaidis, said, “As a primary care provider, I know that our healthcare system is not always set up to offer high quality care to adults on the autism spectrum. However, I was saddened to see how large the disparities were. We really need to find better ways to serve them.”
While it is not surprising, it is sad that the healthcare system is not adequately serving autistic adults. Most of the survey respondents (68%) identified as having Asperger syndrome. Also, half (50%) identified as having disability in the areas of learning/remembering.
One side point, but an important one of this study: the involvement of AASPIRE and of autistic adults in the study. AASPIRE stands for the “Academic Autistic Spectrum Partnership In Research and Education (AASPIRE)”.
Autistic adult and AASPIRE Co-Director Dora Raymaker is also quoted in the press release:
AASPIRE’s community Co-Director, Dora Raymaker, noted “While I am discouraged by the findings, I am also encouraged by the direct involvement of the Autistic community in all parts of this project. In order to ensure research that is truly useful to autistic adults, it is critical to involve us directly in the process.”
I’ve already discussed the participation of AASPIRE, but it is worth noting the author list and affiliations:
Christina Nicolaidis, MD, MPH1, Dora Raymaker, MS1,2, Katherine McDonald, PhD3, Sebastian Dern4, W. Cody Boisclair, PhD4, Elesia Ashkenazy2, and Amanda Baggs4
1Departments of Medicine and Public Health & Preventive Medicine, Oregon Health & Science University, Portland, OR, USA; 2Autistic Self Advocacy Network, Washington, DC, USA; 3Department of Public Health, Food Studies & Nutrition and the Burton Blatt Institute, Syracuse University, Syracuse, NY, USA; 4AASPIRE Community Partner at Large, Portland, USA.
The names that jumped out at me right away were Dora Raymaker and Amanda Baggs. Autistic adults and some of the best people I know discussing rights and ethics of autism.
Here is a press release from Syracuse:
Katherine McDonald, Falk College of Sport and Human Dynamics associate professor and BBI faculty fellow, and other researchers with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) have found that autistic adults report significantly worse health care experiences than their non-autistic peers.
The article, Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership, is published in the Journal of General Internal Medicine.
AASPIRE is an academic-community partnership where academic researchers, autistic adults, and other community members work together throughout the project. AASPIRE is based at Oregon Health and Science University and partners with community organizations including the Autistic Self-Advocacy Network and the Autism Society of Oregon, as well as academic institutions including Syracuse University, Portland State University, and University of Indiana.
Read AASPIRE’s news release about the study
The AASPIRE press release is also available on the Thinking Person’s Guide to Autism.
Here is the 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.
I would love to see more work on this, and solutions to these issues. I would love to see more work on how the medical system as it stands disincentivises doctors from taking on developmentally disabled patients. I would love to see work on how best to serve the medical needs of individuals with communication and sensory issues which make it much more difficult to perform a standard office visit. I would love to see solutions to problems that almost certainly exist.
By Matt Carey