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General Information

What is AASPIRE?

AASPIRE is an academic-community partnership composed of health-services and disability researchers, autistic self-advocates, healthcare providers, disability service professionals, and family members.

AASPIRE uses a Community Based Participatory Research (CBPR) or Participatory Action Research (PAR) approach to conduct research that may improve the lives of people on the autistic spectrum.

What does AASPIRE do?  

AASPIRE conducts research studies on topics that the community of autistic adults feel are relevant. In order to conduct a study we need community interest, appropriate scientific expertise, sufficient human resources, and research funding. Currently we are focused on a few areas: health and health services for autistic adults, the influence of online community on well being, and violence against people with developmental disabilities. For a full list of our current projects see our Current Projects page.

Is AASPIRE a non-profit organization or other type of legal entity?

AASPIRE is a partnership between a number of non-profit organizations and individuals. Because AASPIRE is not a formal organization, money from funding such as research grants goes to the non-profit organizations AASPIRE partners with. For example, a grant may go to Oregon Health and Science University which subcontracts to Portland State University and the Autistic Self Advocacy Network. AASPIRE members at these institutions use the funds to accomplish AASPIRE’s work.

AASPIRE Research Studies

What are your current studies and can I participate?  

Please see our Current Projects page.

What is the relationship between AASPIRE and the Gateway Project?  

Starting in 2008, the Gernsbacher Lab and the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) worked together on the Gateway Project, a secure online registration system committed to respect, inclusion, accessibility, and community relevance. In 2012, data collection was completed on all of AASPIRE’s studies through the Gateway system. The Gateway Project continues to be run by Gernsbacher Lab. If you are interested in learning more about the project, or in registering for Gateway studies, please go to thegatewayproject.org.

Where can I find fliers to put up around my community about your projects?  

Fliers for you to email or print are available on our Get Involved page.

How long will it take to start seeing survey results? Will there be an easy link I can find to read up on final survey findings?  

It can take a very long time (like over a year) for the results of a study to become available. The research process can be slow, and there are a lot of parts to it.

When results for a study become available, they will be posted in the Current Projects area of this web site. They may also be announced on our public announcement-only list serve.

Getting Involved

How can I get involved with AASPIRE?  

There are three ways to get involved with AASPIRE.

  1. As a research participant. If you are eligible for one of our Current Projects, 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. Learn more about telling others about our work from the FAQ questions Can I advertise AASPIRE on my blog or web site?, Where can I get a copy of your logo to set up on my blog or web site, and Where can I find fliers to put up around my community about your projects?.
  3. By working with us. If you, or your organization, are interested in working with AASPIRE to develop and conduct research, please contact us directly at info@aaspireproject.org.
Do I have to have a strong academic background to be involved?  

No! The whole point of CBPR is to involve both academics and non-academics in research. The personal expertise of our non-academic community partners is extremely important. Not all “experts” got their expertise from school 🙂

Can I advertise AASPIRE on my blog or website?  

Yes, please! We would love your help in getting the word out about our studies. See our Get Involved page.

How AASPIRE Works

Who are the members of AASPIRE’s research team?  

AASPIRE is led by two co-directors, one representing the academic and support communities and the other representing the Autistic community. A Steering Committee, which includes the Co-Directors and three additional members (representing academic, Autistic, and support communities), primarily resolves disputes and makes decisions that do not have time to be addressed by the full team. Most high-level organizational decisions are made by the full AASPIRE team, which includes an academic and a community council. Each individual project is led by an academic and a community Principal Investigator (PI), and includes a team of academic and autistic partners.

Please see Our Members page for more information.

Who are your organizational partners?  

Please see Our Partnership page.

What is the relationship between AASPIRE and the organizations it works with?  

AASPIRE benefits from the resources and support of a number of academic and community organizations, such as Oregon Health & Science University, Portland State University, and the Autistic Self Advocacy Network. Some, but not all, AASPIRE team members are employees or leaders of these organizations. AASIPRE is able to use the resources of these organizations in its work because of this relationship, for example, for access to electronic journals through academic organizations or to more effectively disseminate information to autistic adults through community organizations.

Does participating in AASPIRE or its research studies mean I agree with the views or policies of the organizations AASPIRE works with?  

No. Neither participating in an AASPIRE research study, nor participating in AASPIRE as a member of the research team, means you support the views or policies of all of the academic or community organizations that AASPIRE has a relationship with.

How does AASPIRE decide upon projects?  

The AASPIRE team works together to decide what to study, selecting from topics the autistic adults in our group feel are important. The topics are narrowed to a smaller list that is feasible given available academic expertise, available human resources, and funders’ priorities.

How do you come up with your survey questions? Do people on the spectrum help write the surveys?  

The AASPIRE team works together to decide which ideas to measure in a survey. Then the academic partners find existing survey questions that might be used, and show them to the whole group. Community partners inform the group about offensive or unclear language or bad assumptions in the instruments. Together the group chooses which instruments to use and then collaborates on adapting them to make them accessible and non-offensive to autistics. People on the spectrum also come up with additional survey questions as needed.

What is Community Based Participatory Research (CBPR)?  

CBPR is an approach to conducting research which involves having members of a minority community as equal members of the research team. Community members and academics work together on research that the community feels is relevant and of benefit to the community. CBPR strives to equalize power between academics and members of minority communities.

It is not necessary to have a strong academic background in, or understanding of, CBPR to work on a CBPR project.

For a more detailed explanation and links to other resources, see our CBPR page.

How do people from the community and researchers work together on your projects?  

Academic and community members serve as equal partners, each bringing his or her own expertise to all phases of the research. Throughout the research process, the community ensures that the research is respectful, accessible, and socially relevant. The scientists ensure that the research is scientifically sound and academically relevant, that the work has the proper rigor, and that it advances academic goals.

The AASPIRE team works together to decide what to study and to obtain funding. We then collaborate to design our studies, develop and adapt instruments and consent materials, recruit participants, collect and analyze data, and disseminate findings.

The academic and community Co-Principal Investigators implement the team’s decisions, either by themselves or with the help of research staff, a majority of which are on the autistic spectrum or are parents of autistic individuals.

How is this research to the benefit of the community, or how does it improve something?  

One of the Principles of CBPR is that the research be relevant to the community–that the research doesn’t just go to helping academics publish more papers, but that the research really gives something back to the community. AASPIRE strives to conduct research that has practical application for improving the quality of life for autistic adults in ways that autistic adults themselves want. For example, it is our hope that our healthcare study will ultimately lead to a practical toolkit that can be used to improve the quality of healthcare for adults on the autistic spectrum.

What AASPIRE Can and Can Not Do

I have a great research idea. Can AASPIRE do a study about it?  

AASPIRE is always interested in learning what community members or academics are interested in researching. However, whether or not we can actually pursue a study on a particular research topic depends on many factors. In order to conduct a study we need community interest, appropriate scientific expertise, human resources, and research funding (not always things that are easy to come by!). If you’re interested in discussing an idea or possible collaboration further, contact us at info@aaspireproject.org.

Can AASPIRE help me with my schooling or academic development?  

Participating in AASPIRE as a community partner can possibly have educational or career benefit; however, the primary role of community partners is to bring the community perspective to the research. AASPIRE can only assist people with academic career development if they are studying under one of AASPIRE’s academic parters such as Dr. McDonald or Dr. Nicolaidis.

AASPIRE does not have the resources to support students with assignments or research projects.

How can AASPIRE support research being conducted by other research teams?  

In some cases, AASPIRE can support research being done by other investigators. For example, AASPIRE might be able to help review materials to make sure they are accessible and respectful to people on the spectrum, inform potential participants about a study, or publicize study results. Please contact us directly.

Can AASPIRE help me find healthcare resources?  

AASPIRE does not currently have the resources to help people with healthcare questions. In the future we hope to develop tools for autistic adults get better healthcare.

Can AASPIRE help me find advocacy resources?  

AASPIRE is not an advocacy organization. We are a community-academic partnership focused on conducting research that is relevant to autistic adults. Though we sympathize with the challenges many people on the spectrum face in accessing effective resources, we cannot help individuals with personal, legal, civil rights, or services issues.

Misc

Why don’t you always use person first language?  
My question wasn’t answered here. How do I get it answered?  

Contact us at info@aaspireproject.org and we’ll do our best to answer it!

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