Autism Research and Engagement Core
Several MCDD Autism and Research Engagement Core team members are consultants to Simons Powering Autism Research (SPARK), a long-term study of autism spectrum disorder. Those members include Marina Sarris, MA, web content administrator; Cheryl Cohen, MS, director of online community programs; Alison R. Marvin, PhD, research manager; Jaimie Toroney, MHS, research manager; and J. Kiely Law, MD, MPH, research director.
On February 8, Sarris authored an article that was published on SPARK’s website, “Black Families in SPARK Reveal Barriers to Autism Help.” The article discusses how obstacles like racism, stigma, cultural disparities, insufficient information and limited access to care affect Black families seeking assistance for children with autism.
The Autism and Research Engagement Core recently produced two SPARK Research Match summary reports. The first report, “Underage Drinking in Autistic and Non-Autistic Youth,” was published on January 17. It discusses research comparing alcohol-use patterns and motivations among youth with and without autism, revealing differences in drinking behaviors and reasons for drinking, highlighting the need for tailored prevention programs for autistic youth. The second report was published on February 23, “Effects of Barriers to Diagnosis and Treatment for Black Families of Autistic Youth.” This report discusses a study exploring the barriers faced by Black families in accessing autism diagnosis and treatment services for their children, revealing the impact of these barriers on parental stress levels and treatment satisfaction, with recommendations for improved support and advocacy.
On March 13, Sarris authored an article, “Bobby Durbin Finds Community, Challenges Expectations.” The article profiles Sherry Durbin's journey raising her son Bobby, who was diagnosed with autism three decades ago, emphasizing their commitment to inclusion and community involvement, and their participation in autism research through the SPARK study. On March 22, Sarris authored another article, “The Challenge of Physical Fitness for Autistic People.” The article explores the challenges individuals with autism face in maintaining physical fitness and avoiding obesity, highlighting motor skill difficulties, barriers to sports participation and strategies for making physical activity more inclusive and enjoyable for individuals with autism. Lastly, Sarris authored an article on March 26, “The Struggle to Identify Autism in Girls: Sarah’s Story.” The article follows the journey of Sarah Sanders, who went undiagnosed with autism until she was 19-years-old, shedding light on the challenges faced by girls with autism, the importance of recognizing their unique experiences and the need for more research and support for individuals with autism throughout their lives.
SPARK Research Match, which matches researchers with people who want to participate in their autism studies, has launched more than 240 studies. Novel studies are being launched at the rate of one per week. SPARK has invited more than 122,000 families (often more than once) into these new research studies. Almost 58,000 families have responded to study invitations. Researchers have published 72 articles in scientific journals. The ability to recruit research participants from SPARK’s members has enabled many research studies throughout the country to meet their recruitment goals and successfully complete their studies.
People On the Go (POG) Maryland
People On the Go Maryland (POG) continued their advocacy efforts by participating in Maryland’s Developmental Disabilities Day (DD Day) with a strong presence. Mat Rice, POG executive director, gave a rousing speech and shared the stage with Maryland Governor Wes Moore. Tracy Wright, POG deputy director and director of training, guided a group of trainees to engage in direct discussions with legislators. James Orman, POG program coordinator, coordinated transportation for members and provided logistical arrangements. Griffin Clabaugh-Bareford, POG social media coordinator, captured photos, documented, and shared the day's events on various social media platforms. Cody Drinkwater, POG public policy assistant, and Josh Delclos, Project STIR trainer, delivered a presentation about self-advocacy during a lunch-and-learn event.
Additionally, POG has advocated for the disability community by submitting legislative testimony on various bills, including topics such as open captioning at movie theaters, voting rights and the Developmental Disabilities Administration (DDA) budget. Rice and Wright have delivered in-person testimony in legislative chambers and engaged directly with legislators, effectively representing members of the disability community. POG members also plan to support the Employed Individuals with Disabilities bill, aimed at eliminating age discrimination in service eligibility determinations.
