"Partnering with Autistic Adults* to Develop Tools to Improve Primary Healthcare"
The AASPIRE Healthcare Toolkit project used a community-based participatory research approach to develop and try out an interactive web site and printable toolkit for adults on the autism spectrum, people who support adults on the autism spectrum, and primary care providers. The purpose of the toolkit is to help improve healthcare access and quality for people on the autism spectrum.
We conducted three studies to develop and try out the toolkit.
Study 1 sought to understand healthcare experiences and recommendations of autistic adults, people who support autistic adults, and primary care providers (PCPs). We asked people to tell us about their experiences and recommendations.
Study 2 tested the program for creating a customized accommodations letter for adults on the autism spectrum to use with their healthcare providers. We conducted several studies to make sure that the tool was easy to use and that it communicated useful information to healthcare providers.
Study 3 tried out the full toolkit in the "real world" to see how people liked it. We asked adults on the autism spectrum and primary care providers to use the healthcare toolkit and tell us what they thought.
This study has been finished. The finished AASPIRE Healthcare Toolkit is available at www.autismandhealth.org. We will post publications when they are available.
Nicolaidis, C., Raymaker, D.M., McDonald, K., Baggs, A.E.V., Dern, S., Kapp, S., Weiner, M., Boisclair, W.C., Ashkenazy, E. (2016) "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum. Autism: The International Journal of Research and Practice. Published ahead of print, April, 2015. DOI: 10.1177/1362361315576221.
Download the interview paper (PDF, ~233Kb).
Nicoladis, C., Raymaker, D.M., McDonald, K., Kapp, S., Weiner, M., Ashkenazy, E., Gerrity, M., Kripke, C., Platt, L., Baggs, A. (2016). The development and evaluation of an online healthcare toolkit for autistic adults and their providers.e, Journal of General Internal Medicine. Published ahead of print June, 2016. DOI: 10.1007/s11606-016-3763-6
Download the toolkit main paper (PDF, ~480Kb).
This project was funded by a grant from the National Institute of Mental Health (R34MH092503).
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