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Identifying barriers to participation in autism research for Black families

July 2022 - March 2023

Black families are significantly underrepresented in autism research. We want to understand barriers to participating in research for Black families, so that we as researchers can do a better job of recruiting and retaining more representative samples. This is critical to assure that the findings from our work are applicable to all families with ASD, and that specific experiences and opinions of Black families are heard and represented.

What are the goals of the study?

The study aims to gather the opinions of Black families about participating in autism research and hopes to amplify and accurately represent the voices and experiences of Black families of children with autism. We will use what we learn from this study to generate recommendations to the autism research community on how to increase the inclusion of Black families in autism research.

What will happen during the visit or online?

Participation will involve a phone interview that will take ~1 hour, no travel is required. We will ask questions about your family, your child’s autism diagnosis, and your opinions about research. Additionally, the caregiver will complete a brief online demographics survey after the interview.

How will this help families?

This research is critical to assure that the findings from our work are applicable to all families with ASD, and that specific experiences and opinions of Black families are heard and represented.

Eligibility Criteria

Participants must be a Black/African American parent/caregiver of at least one Black child with autism spectrum disorder.

View the study flyer here.

Contact Information
Research Study Website
Carolina Institute for Developmental Disabilities

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