Community Autism Research Ambassador Program

The Problem

There are large disparities in timing of diagnosis, access to care, referrals, and unmet needs for African American children with ASD.
(Constantino et al., 2020; Kuhlthau et al., 2001; Liptak et al., 2008; Maenner et al., 2020; Travers et al., 2014)

The Solutions

• Engaging African Americans with ASD in research will help close gaps and promote equitable care.
• To do this, the African American ASD community must engage with researchers to co-create a research agenda.

Who is the Community Autism Research Ambassador Program for?

While there is some evidence that more research networks and projects focused on autism spectrum disorder (ASD) have reached out to self-advocates and family stakeholders in their work, an enormous demand for more meaningful stakeholder engagement remains, especially in the African American autism community, where both research participants and researchers are under-represented.

Recognizing this need, Family Voices developed the African American Autism Research Agenda with funding from the Patient-Centered Outcomes Research Institute. The Research Agenda was co-created by more than 200 partners, including African American autistic self-advocates, parents/family caregivers, researchers, providers, and funders. It outlines three key strategies for researchers to ensure their research is culturally responsive and relevant to the African American community, provides guidelines for African Americans to participate in autism research, equitably, and considers how research results will be shared back with the community in ways that are accessible and actionable.

The program is led by African American self-advocates and family members and empowers African American families and self-advocates to be more involved in autism research. The goal is to help develop autism research, services, and information that meet the needs of the African American community.

Participants in the Community Autism Research Ambassador Program learn about:

• The basics of autism, the diagnostic process, and interventions
• Early identification of autism with the Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” program​ materials
• Becoming a stronger advocate
• Patient-centered Outcomes Research
• Research partnerships
• Disparities in diagnosis, treatment, and research that affect the African American community
• Developing research topics and a plan to work with researchers

Autism Research Equity Training

The second phase of this project involves sharing the outcomes and insights of the Autism Research Ambassador Program with autism researchers looking to improve equity in their projects and programs.

The Autism Research Equity Training is a virtual program that helps autism researchers reach and engage African American families and self-advocates, while learning to develop processes and practices that improve equity. 

This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASC-IDD-00251). The views presented are solely the responsibility of the authors and do not necessarily represent the views of PCORI, its Board of Governors or Methodology Committee.