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“Community Based Participatory Research to Improve the Health Care of Autistic Adults*”

What is AASPIRE Healthcare Study 1?

The AASPIRE Healthcare Study used a community-based participatory research approach to collect information that could be used to improve healthcare.

In the first part of the study we conducted an online survey. The survey compared the healthcare experiences of adults on the autism spectrum, non-autistic adults who have disabilities, and non-autistic adults without disabilities. There were two main goals for the survey. Goal one was to see if there were differences in how people feel their healthcare needs were being met and how satisfied they were with their care. Goal two was to compare the barriers to healthcare for the three groups to see if there were differences in the types of things that make it hard to get health care.

Some of the results of the healthcare survey have been published by the Journal of General Internal Medicine in a paper “Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership”. We found that autistic adults report significantly worse health care experiences than their non-autistic peers. View the press release, download the paper (PDF, ~220Kb), or read the paper online.

In the second part of the study, we conducted in-depth interviews with about 30 adults on the autism spectrum. The main goal was to get an in-depth understanding of the experiences of adults on the autism spectrum and their recommendations about healthcare, including examples of what worked or did not work and what they think helped them get better healthcare. If eligible, participants could choose to participate in an interview via email, online chat, or telephone.

This study is currently closed to new participants. We will be posting results when they are available.

Results Published to Date

Results of the Healthcare Survey

Nicolaidis, C., Raymaker, D., McDonald, K, Dern, S., Boisclair, W.C., Ashkenazy, E., Baggs, A. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership Journal of General Internal Medicine. 28(6);761-769.

Raymaker, D.M., McDonald, K.E., Ashkenazy, E., Gerrity, M., Baggs, A.M., Kripke, C., Hourston, S., & Nicolaidis, C. (2016). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 1-13.
access barriers paper online

Favorable editorial about the healthcare survey paper, written by D. Mandell.

This study is funded by the Oregon Clinical and Translational Research Institute

OHSU IRB #5580

Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University; Dora Raymaker, MS, Autistic Self Advocacy Network

* Explanation of use of Identity First Language on this site

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