Frequently Asked Questions
What are the tools?
We created three tools in this project:
1. Autism Research Fundamentals: This tool will teach you about important research concepts. You can use it to learn more about how research is created. This can give you more information so you can collaborate with researchers to create new autism research. It’s created for autistic people, caregivers, and other community members who are not researchers.
2. Engagement Strategies for Researchers: This tool teachers researchers about ways to build partnerships and conduct community-engaged research with autistic people and caregivers of autistic children.
3. Guiding Principles and Research Priorities: This tool describes ideas for the future of Early Intervention* autism research. It has ideas generated by autistic adults, autistic caregivers, and non-autistic caregivers of autistic children.
Why are you focused on early childhood?
Research-community partnerships are important for research about autistic people of all ages. We focused on early childhood because in this age range, it is difficult to ask those in the therapies of interests (autistic toddlers) about their experiences. We also think that early childhood therapy experiences have a long-lasting impact on autistic people and their families. So, we hope that better research-community partnerships will lead to early childhood therapies and supports that have positive effects that help autistic people as they age into adulthood.
Who was involved in this project?
This tool was a collaboration between autism researchers, autistic adults, autistic caregivers, and non-autistic caregivers of autistic children who have received services through the Early Intervention program in the United States. The project leads are Morénike Giwa Onaiwu, Jordan Lee, and Megan Roberts. We had 12-17 community partners help with various parts of the project.
You can learn more about our team by clicking “About our Team.”
How did your community partners help with the project?
We aimed for equal power-sharing and engaged participation of our community partners, with decisions made by advisory board consensus. We also allowed for flexible participation options so people could participate as they wanted to. We describe more about how we worked together in the “About the Team” page.
How was this project funded?
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI©) Eugene Washington PCORI© Engagement Award. The content is solely the responsibility of the authors and does not necessarily represent the official views of PCORI©. You can click here for more information about the project on PCORI’s website.
Project Leads: Dr. Megan Roberts, Dr. Morénike Giwa Onaiwu, Jordan Lee
When did this project take place?
This project is taking place between January 2023 and December 2024.
Why is Comparative Effectiveness Research important?
Comparative Effectiveness Research is research that compares benefits and harms of two or more therapy approaches. These research studies are used to provide information that caregivers and autistic people can use to make decisions about therapy choices. These studies compare approaches that are important to the community. They also include outcomes, or goals, that community members care about. You can learn more about this on PCORI’s website here.
Can I get a certificate for using any of the tools?
We don’t offer any formal certificates for using any of the tools or trainings. These tools are informational and you may use them as you see fit; we do not have any formal oversight into how people use the tools. However, let us know if this is something you may be interested in for the future!