Action Research in Partnership with the Autistic Community
Interview with Dora Raymaker
Written by Elesia Ashkenazy
The Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) brings together the academic community and the Autistic community to develop and perform research projects relevant to the needs of adults on the autistic spectrum. AASPIRE's partnership adheres to the principles of Community Based Participatory Research (CBPR or PAR), whereby researchers and community members serve as equal partners throughout the research process. The special skills, expertise, and perspective that each community offers to the project as a whole is the strength of Community Based Participatory Research.
Elesia: Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Whew, what a mouthful! How was AASPIRE created and how did you decide upon a name for your organization?
Dora: In 2006, my friend Christina Nicolaidis and I, plus some other local parents and self-advocates, formed a "journal club" that met in my living room. Our plan was to review autism research and geek out like the science nerds we are.
But we found ourselves instead talking about larger issues with the research. A lot of it wasn't relevant to what the Autistic community cared about, nor was it likely to ultimately improve our lives. Some of it used degrading, dehumanizing, and offensive language. Some of it had questionable validity because the methods didn't take autistic thinking into account. Some of it reinforced false sterotypes.
Christina is a physician and health services researcher. She was already doing Community Based Participatory research with local African American and Latina communities. The issues that came up in our autism journal club were the same ones that had come up in communities of racial and ethnic minorities. These were the very issues that had motivated the development of Community Based Participatory Research in the first place.
So we decided to stop complaining and start doing something about the issues. Christina and I found some more people from academic, Autistic, and support communities and put together a new research group with a CBPR approach.
As far as the name we started out calling it "The Rift Project" in reference to the rift or gap between the Autistic community and the scientific, parent, and professional communities (and sometimes the rift between those communities as well). That name wasn't very catchy or postive though, so we changed it--after much google searching and rejecting names that were similar to any exisiting groups (at the time), and, er, making sure we could get a domain name with our name on it. Ah, the added complexity of the Interwebs!
Elesia: In a nutshell, what is Community Based Participatory Research (CBPR), and what are a few of the most important points to remember about this research approach?
Dora: Community based participatory research is a response to challenges traditional research has to adequately addressing the needs of minority communities. For example, not meeting (or even knowing in the first place) minority priorities, engendering distrust of research, and leading to issues with the science due to researchers not understanding how to create accessible or effective materials.
CBPR is an interdisciplinary research approach involving academics and community members working together as equal partners in all phases of the research process. "Subjects" become part of the research team. Both academics and community partners are expected to share power equitably and learn from each other. This is different from traditional research which does not usually include non-academics in the research process.
CBPR is committed to benefiting and capacitating minority communities. Research is not done about minorities; it is done WITH minorities. Researchers still benefit academically, but communities also benefit by getting desired interventions and data for policy change, and by increasing community skills and resources.
A few important points to remember about CBPR are:
1) Involving non-academics in research does not mean compromising the research rigor. And letting researchers access the community does not mean selling out :-)
2) Equal power sharing doesn't mean everyone does the same thing. It means everyone contributes equally with the expertise they have. Community memebers aren't expected to be academics; CBPR recognizes that not all "expertise" is the kind learned in college!
3) CBPR is a research approach, not a research method. CBPR can be used with any scientific method.
Elesia: What project/s is AASPIRE currently running, and how can the Autistic community get involved?
Dora: We are currently conducting a study on healthcare and a study on the relationship between internet use, sense of community, and well being. We are collaborating with others on a study on the relationship between interpersonal violence and health for people with intellectual and developmental disabilities, and The Gateway Project, a secure registration system for ongoing studies committed to inclusion, respect, accessibility and community relevance.
As far as how to get involved, there are three ways to get involved with AASPIRE.
1. As a research participant. If you are eligible for one of our open studies, you may decide to participate in a study. This helps us to collect data we need in order to do our work.
2. By telling others about us. Help us collect data for our work by telling others about our studies. You can find more information on our web site atAASPIRE.
3. By working with us. If you, or your organization, are interested in working with AASPIRE to develop and conduct research, please email us directly at email@example.com.
Elesia: How do you envision AASPIRE three years from now (e.g. what are your goals)?
Dora: My main goal is to be able to complete the next phase of our healthcare study--to be able to take all the data we've collected on healthcare and turn it into practical tools that may ultimately improve healthcare for the Autistic community in the U.S.
I'd also like to see us have sufficient funding to be able to hire people from the Autistic community to staff our projects.
Elesia: Is there anything I have not asked that you would like to share?
Dora: Just that I know some (maybe many) of the people reading this have already contributed as participants in our studies. And I want to say thank you!
....................................... To learn more about AASPIRE studies, visit the Current Projects Page