Share

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

More Research studies from this topic: Personal Experience

Developing a Gold Standard for Tracking Adult Functional Outcomes in Autism Spectrum Disorder
Online web-based study
Compensation Skills in Autism
Online web-based study
The Vanderbilt Sound Sensitivity Study – Understanding How the Brain Processes Sounds in Autistic Adults with and without Sound Sensitivity
In-person participation required
Autism and Human-Animal Interaction: A Mixed Method Approach to Emotion Regulation
Online web-based study
Understanding and responding to the therapeutic needs of autistic children who have experienced physical abuse
Online web-based study
Adult Autism Spectrum Disorder Study
Online web-based study
Family Experiences in Fragile X and Autism
Online web-based study
The EMBRACED Study
Online web-based study
Center for Brain Disease Diagnosis at the NRI
Online web-based study In-person participation required
Parent Support Program for Parents with a Young Child Recently Diagnosed with Autism Spectrum Disorder
Online web-based study
Cute Aggression in Children with and without Autism Spectrum Disorder
Online web-based study
Genetic Testing for Autism – The Autistic Adult Perspective
Online web-based study
Autism Intervention Research Network on Behavioral Health
Online web-based study
Simons Searchlight
Online web-based study
An Exploration of the Mental Health & Quality of Life of Latinx Young Adults with Autism Spectrum Symptomatology
Online web-based study
ECHO
In-person participation required
Imaging Cognition and Neurodevelopment (ICAN)
In-person participation required
Infant-Caregiver Synchrony in Autism
In-person participation required
Managing Feeding and Sleep at Home
Online web-based study
What do you Eat?
Online web-based study
Autism ETA Cohort Study
Online web-based study
RARE-X Data Collection Program
Online web-based study
Next Generation Siblings: How Having a Sibling with ASD Affects One’s Decision to Have Children
Online web-based study
Investigating Depressive Symptomatology in Adolescents with ASD and ADHD
Online web-based study
Strength Identification and Expression in Young Adults
Online web-based study
The True/False Study for Adults on the Autism Spectrum
Online web-based study
Caregiver-Endorsed Strategies for the Treatment of Sensory Reactivity Symptoms in Children with Neurodevelopmental Disorders
Online web-based study
Assessing Motor Control across different Sensory Environments in Individuals with and without Autism Spectrum Disorder
In-person participation required
The Truth About Others: A Paid Internet Study for Autistic Adults
Online web-based study
Language Use in Autism
Online web-based study