Pastor S.T. Williams and the members of St. Paul Evangelical Lutheran Church, located in the West Adams district of Los Angeles, hosted a health forum on the impact of autism on the African American community on Oct. 29.
The session was presented by Amanda Gulsrud, Ph.D., and clinical director of the UCLA Semel Institute for Neuroscience and Human Behavior and Center for Autism Research and Treatment, and SPARK (Simons Powering Autism Research Knowledge) Studies.
According to medical studies, 1 in 36 children has autism, and SPARK believes that autism research is more powerful when children and families from varying racial and ethnic groups are fully represented, allowing researchers to understand autism and improve lives.
SPARK hopes a new video campaign helps the research initiative capture the attention of more Black and African American individuals and families. Since launching nationally in April 2016, SPARK has enrolled more than 120,000 individuals with autism spectrum disorder (ASD) – 80% autistic children and 20% autistic adults. So far, more than 15,000 African American and Black autistic individuals and families – roughly 12.5% – participate in SPARK.
“We have a good number of African Americans and Black autistic individuals and families involved in SPARK, but we really want to capture as many people as possible to get that richness and diversity we need to fully have the chance to uncover the secrets to a condition that has implications for a lot of other people,” says Dr. Wendy Chung, Director of Clinical Research at the Simons Foundation Autism Research Initiative and principal investigator of the SPARK study. “We hope that hearing some of the personal stories of our participants will inspire others to join our efforts so we can move toward equal representation and provide everyone with an equal chance to have a happy, healthy, and productive life.”
In the first of two videos, single father Rico Winston shares his story of how his son, Isra’El, was diagnosed with autism at 2-years-old. Through his own research, he found his way to SPARK, and now he and SPARK are committed to improving Isra’El’s life. He provides five tips on how a dad can help his child with autism. See his video here: Rico Winston’s Five Tips.
The second video highlights Darnell Newsum, mother of two adults with ASD and one of the parents of autistic children and autistic adults among the SPARK staff. She focuses on her youngest child, her daughter, and shares how her journey to SPARK continues to enrich her family’s life. See her video here: Darnell Newsum Journey
To learn more about SPARK’s growing community, visit sparkforautism.org or call 1-844-54-SPARK (77275).