AASPIRE Healthcare Toolkit
"Partnering with Autistic Adults* to Develop Tools to Improve Primary Healthcare"
What is AASPIRE Healthcare Toolkit?
The AASPIRE Healthcare Toolkit uses a community-based participatory research approach to develop and try out an interactive web site and printable toolkit for adults on the autistic spectrum, people who support adults on the autistic spectrum, and primary care providers. The purpose of the toolkit is to help improve healthcare access and quality for people on the autistic spectrum.
We will conduct three studies to develop and try out the toolkit.
Study 1 seeks to understand healthcare experiences and recommendations of autistic adults, people who support autistic adults, and primary care providers (PCPs). We will be asking people to tell us about their experiences and recommendations.
Study 2 will test a program for creating a customized accommodations letter. Adults on the autistic spectrum can use this letter tool to communicate their needs and preferences to healthcare providers. We will conduct several studies to make sure that the tool is easy to use and that it communicates useful information to healthcare providers.
Study 3 tries out the full toolkit in the "real world" to see how people like it. We will ask adults on the autistic spectrum and primary care providers to use the healthcare toolkit and tell us what they think.
How do I get involved in the Healthcare Study? What is the sequence of events?
We are currently conducting the Study 1 interviews. We are looking for:
Adults who have been diagnosed with an autistic spectrum disorder and who live in the Portland, Oregon metro area. (We have completed interviews with a national sample of adults on the spectrum as part of Healthcare Study 1);
Family members, friends, and support providers who have assisted autistic adults in healthcare settings;
Primary care providers who have provided care to at least one adult on the autistic spectrum in the past year.
If you, or someone you know, is interested in participating in these interviews, please contact Marcie Tedlow at 503-494-1207 or tedlow@ohsu.edu.
It may take between 1 and 2 hours to complete an interview. Interview participants will receive $50 in appreciation of their time.
Check this site later or contact us for information about how to participate in Study 2 or Study 3.
What else can I do to help?
Please help us spread the word about the study! Here are fliers about Study 1 that you can pass along to others. Also, please feel free to link to this site.
- Flier for autistic adults and direct support providers: PDF, 102Kb or online for adults and supporters
- Flier for primary care providers PDF, 87Kb or online for PCPs
Check back later for more information about how to participate in Studies 2 and 3!
This project is 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 Person First Language on this site