About the Project

Why are we doing this project?

Many autistic people say that their early childhood therapies had a bad effect on their mental health. Some caregivers of autistic toddlers say that their child’s therapy services don’t meet their needs.

We think researchers should work with with autistic people and caregivers. This way, the community has power to create inclusive therapies that help with skills that matter to them.

But creating partnerships is a lot of work. And most researchers don’t know how to do this well.

This project gives researchers the tools they need to partner with community members and understand their needs. It also gives community members more information about the research process. This will help both groups work together to change the future of autism therapies.

We also hope these tools will be used to inform future Comparative Effectiveness Research. This means research studies that compare benefits and harms of two or more therapy approaches. We think this is important for giving people information they need to make informed decisions. See the FAQs below for more information.

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.

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 autistic community partners and two additional autism researchers help with various parts of the project.

You can learn more about the people on our team and how we worked together by clicking “About our Team.”