Autism Genetics and Human Diversity Project
Researchers at UCLA are conducting a study on autism genetics for African‑American families to understand how biology and environment affect early diagnosis and care.
Fast Facts
African-American or Black (Bi-racial is included)
Parents and their child with diagnosed or suspected autism.
Compensation
provided up to $375
Conducted in
Los Angeles, CA
Study Background
Black families have long been underrepresented in autism genetics research. Although African Americans make up about 14% of the U.S. population, they account for less than 10% of participants in genetic studies. Early findings from UCLA and other researchers suggest that the genetic factors linked to autism in white families may not influence autism in the same way in Black families. Some genetic markers may have weaker effects, while others may be entirely different —but researchers need more Black families to participate in research to better understand these patterns.
The Autism Genetic and Human Diversity (AGHD) study is designed to change that. By partnering directly with Black families, UCLA aims to identify which genetic factors contributing to autism are shared across all people and which may be unique to individuals of African descent. Including Black families in genetic research is essential for building a more accurate, inclusive understanding of autism — one that supports better diagnosis, earlier identification, and more equitable access to care for Black children and their families.
Study Background
Black families have long been underrepresented in autism genetics research. Although African Americans make up about 14% of the U.S. population, they account for less than 10% of participants in genetic studies. Early findings from UCLA and other researchers suggest that the genetic factors linked to autism in white families may not influence autism in the same way in Black families. Some genetic markers may have weaker effects, while others may be entirely different —but researchers need more Black families to participate in research to better understand these patterns.
The Autism Genetic and Human Diversity (AGHD) study is designed to change that. By partnering directly with Black families, UCLA aims to identify which genetic factors contributing to autism are shared across all people and which may be unique to individuals of African descent. Including Black families in genetic research is essential for building a more accurate, inclusive understanding of autism — one that supports better diagnosis, earlier identification, and more equitable access to care for Black children and their families.
Additional Information
The purpose of this study is to help researchers understand if there are genetic differences that may be unique to African-American families with autism and figure out how behavioral and environmental factors may contribute to delays in diagnosis and access to care.
Families who join this study should:
Have a child with diagnosed or suspected autism who:
Is age 3–18
Is not a preemie
Doesn’t have known genetic disorders
Identify as Black/African American
Have a biological parent willing to participate in the study with the child
Live in Los Angeles, California
You will be asked to complete questionnaires and interviews about your child’s medical history, behavior, social skills, and communication skills.
Your child will undergo some behavior and cognitive (intelligence) testing. A blood sample will be taken from your child, biological parents, and any sibling older than 3. This blood sample will be used to examine genetic factors that may be unique to African American families with autism. Saturday appointments are available.
Yes! You’ll receive $250 when your family completes all elements of the study, plus an additional $125 if more than one child with autism participates. Parking costs for the in‑person visit are reimbursed. If you travel more than 20 miles to our study site, you’ll also receive a $50 travel reimbursement. You’ll also receive a detailed feedback letter and a testing data appendix summarizing your child’s behavioral and developmental assessments.
There is no charge for you to participate in our research study. You do not need insurance, and your insurance will not be billed.