The Simons Foundation Autism Research Initiative (SFARI) is pleased to announce that it made five awards as part of the Simons Powering Autism Research Knowledge (SPARK) Research Match Diversity, Equity, and Inclusivity (DEI) request for applications (RFA).
The SPARK Research Match DEI RFA was launched in 2021 to address historic racial disparities in research participation by Black or African American individuals. This RFA solicits studies on autism spectrum disorder (ASD) that recruit Black or African American participants, with the goal to support research that improves access to SPARK and related resources for underrepresented members of the ASD community.
“Diversity is a core value of SPARK,” says Wendy Chung, director of clinical research at SFARI and the Kennedy Family Professor of Pediatrics in Medicine at Columbia University. “We’re proud to support researchers who work to improve representation in autism science and provide access to resources that have historically been less accessible to people of color within the ASD community.”
The SPARK Research Match DEI RFA will continue in 2022, with deadlines on March 31 and June 30. Applications are reviewed quarterly. Interested applicants can find more information on the initiative here.
Initial recipients include:
Rachel Goodson, D.O. (Children’s Mercy Hospital)
Barriers and facilitators to precision medicine in Black children with autism spectrum disorder
The field of pharmacogenomics (or the identification of biomarkers regarding drug metabolism and activity to inform precision prescribing) is rapidly advancing for individuals with ASD, but these advances are not equitably benefiting all communities. Specifically, Black and African American families’ participation in pharmacogenomic studies is significantly lower than white families, which limits the clinical utility of the information gathered for racial/ethnic minorities. Clinical data also suggests that Black families may be less likely to have access to clinical precision medicine supports. This work will survey the parents of youth with ASD to gather both quantitative and qualitative data to identify modifiable barriers and facilitators that can increase access to pharmacogenomic testing, openness to research participation and the downstream benefits of this evolving science for Black individuals with ASD.
Chris Gunter, Ph.D. (NIH National Human Genome Research Institute)
Genetics and Autism Literacy Survey (GALS)
Only 20 to 30 percent of American families receive genetic testing at or near the time of a diagnosis with ASD. This low figure may be attributed in part to a lack of genetic literacy, or knowledge of genetic principles and their applications. To help understand genetic literacy, particularly among Black or African American people with ASD and their families, Chris Gunter administered the Genetic and Autism Literacy Survey (GALS) to participants in SPARK. The results will be used to assess the relationship between exposure to ASD, genetic literacy and attitudes about genetic testing, thereby generating valuable data regarding barriers to genetic testing for particularly non-white individuals and families.
Lauren Quetsch, Ph.D. (University of Arkansas)
Equity and access to care: Barriers to diagnostic and treatment services for Black families of children with autism spectrum disorder
The stress that families of children with autism face while navigating the healthcare system may be increased for Black families who experience anti-Black racism. Some challenges faced by Black families include long waitlists, lack of services in the area, limited specialized providers, racial microaggressions and perceived stigma. The present study will explore how these difficulties may impact Black families’ thoughts on treatment effectiveness, treatment satisfaction and parental stress. Findings from this project will contribute essential knowledge for creating a healthcare system that is responsive to the needs of Black families as they advocate for their children with autism.
Katherine Stavropoulos, Ph.D. (University of California, Riverside)
Neuroscience of social motivation and anxiety in children with and without autism spectrum disorder
Understanding the brain basis of social behavior in ASD is important for creating better and more individualized interventions. Various theories have emerged about why individuals with ASD are less likely to initiate social interactions than their peers. One such theory is the social motivation hypothesis, which posits that individuals with ASD initiate interactions less because these interactions are less rewarding for them. Other theories focus on anxiety as a potential explanation. In this project, Katherine Stavropoulos aims to better understand the brain basis of anxiety and social motivation in individuals with and without ASD in order to better understand the contribution of these two constructs to social difficulties faced by this population. To help improve equity in the field of autism science, an important objective of this project is to recruit Black or African American individuals with ASD, who have often been excluded from research because existing equipment used to study brain activity such as electroencephalography caps (EEG) is not well-suited to traditional Black or African American hairstyles. This project is an important step towards increasing equity in neuroscience research in ASD.
Amy Weitlauf, Ph.D. (Vanderbilt University Medical Center) and Theodora Pinnock, M.D. (Meharry Medical College)
Black families’ experiences of autism diagnosis: Preliminary parent feedback to inform culturally competent care
Existing systems of diagnostic care for people with ASD were designed by primarily white providers to serve white families, creating significant barriers for Black and African American people with ASD and their families. In this project, Amy Weitlauf and Theodora Pinnock surveyed the parents of children with ASD who identify as Black or African American about their retrospective diagnostic experiences to gather quantitative as well as qualitative data about the timing and targets of concerns about ASD and the roles played by different professionals as well as perceived impacts of racial, ethnic or cultural factors. Data gathered will inform the creation of new screening tools and care paradigms to reduce existing gaps in care, with the goal of enhancing traditional surveillance to increase the number of Black children with a diagnosis of ASD before their third birthdays.