Overview

We have partnered with Dr. Morénike Giwa Onaiwu and an advisory board of 12 autistic adults and (autistic and allistic) caregivers of autistic children to create tools that researchers and the autistic/autism communities can use to co-design early childhood autism research that prioritizes the needs of autistic people and their families. Learn more at the new project website here.

Why are we doing this project?

Many autistic people report that their Early Intervention (EI) experiences had a negative effect on their long-term mental health and well-being. Caregivers of autistic children also report that their child’s EI services do not address their priorities for their child and their family. Researchers have been very slow to consider the actual, real-world needs of autistic people and their families. Researchers should partner with autistic people and caregivers to design therapies and supports that are inclusive, relevant, and acceptable to the community. But they usually lack the resources or attitudes required to do this participatory work.

We hope to fix these problems by creating:

A tool that caregivers, autistic people, and other interested community members can use to learn about core research concepts, the history of autism research, and how to create inclusive research aligned with the needs of autistic people and caregivers
A tool outlining caregivers’ and autistic people’s priorities for research about early autism therapies and supports
A tool researchers can use to learn how to collaborate with autistic people and caregivers throughout the research process.

This project will take place between January 2023 and December 2024. It is funded by a Eugene Washington PCORI Engagement Award (click here for more information).