Continuing the Journey to Explore Autism Genetics in African American Families

Fall 2023

By: Marshel Adams

We are excited to announce that Dr. Daniel Geschwind’s Autism Center of Excellence (ACE) Network focused on the genetics of African Americans receives its fourth consecutive five-year award from the National Institutes of Health (NIH). The NIH’s ACE Network grants are designed to support large, collaborative research projects that aim to advance our understanding of autism spectrum disorder (ASD) and improve the lives of autistic individuals and their families. The ongoing Autism Genetics and Human Diversity Project will continue UCLA CART's partnership with the Albert Einstein College of Medicine, Emory University, Johns Hopkins University, Washington University in St. Louis (WUSTL), and Yale University.

Noteworthy Data Points

Over the last 15 years of the Autism Genetics and Human Diversity Project:

• Over 1,100 African American families have been assessed for ASD.
• Over 150 toddlers aged 18-35 months received a first-time diagnosis of ASD (at the Emory & WUSTL recruitment locations).
• Approximately 300 individuals aged 3+ years who were suspected to have ASD received a first-time diagnosis (throughout all recruitment locations).
• Investigators have contributed significant advances in our understanding of ASD and enhanced open data and biomaterials resources for the research community via the NIMH Human Genetics Initiative.

Why This Research Matters

• Our project fills a critical gap in ASD research by recruiting African American individuals and families, a group not previously represented in ASD genetics research.
• The project will enhance existing resources by recruiting at least 770 new individuals with ASD and their family members to bring our cohort to 2,000 individuals of African American descent with ASD.
• We will conduct the first comprehensive assessment of rare single nucleotide variation (SNV) and common variation contributing to ASD susceptibility in African Americans.
• We will use innovative methods to define local ancestry and ascertain the background on which different versions of genes occur, which will improve classification of rare variation in ASD.

Understanding Autism: A Collaborative Endeavor

UCLA CART will continue its meaningful collaboration with the Special Needs Network, Inc. (SNN) to drive participation. Located in Los Angeles, SNN is a leading advocate for underrepresented communities, focusing on working with autistic individuals, individuals with disabilities, and operating at the intersection of social justice and disability rights. This partnership not only enhances the quality of autism research but also strengthens community ties, promotes inclusivity, and contributes to overall efforts.

Joining the Research Journey

We invite all families of African American descent with children aged 3 years or older with suspected or diagnosed ASD to join us on this journey. By participating in this study, African American families who suspect their child has autism can receive free behavioral assessments by trained autism specialists to determine if a diagnosis of ASD is appropriate. The study can also help families whose child has already been diagnosed with ASD by providing basic recommendations based on the autism specialist’s assessment.

To learn more about this unique research opportunity, please contact Marshel Adams at mfadams@mednet.ucla.edu or 310-794-4090.