The Marcus Foundation has announced a $21.9 million grant to subsidize the largest-ever study of behavior, brain, and biomarkers in children to better understand what causes autism severity.
Children with profound autism typically require around-the-clock care and support. In the U.S., more than 2.3 million children have autism spectrum disorder. Of those diagnosed, 62,000 of those kids have profound autism, living with severe to profound intellectual disabilities, limited to no verbal communication, and extreme challenges with daily living skills.
Programs in Atlanta for children living with profound autism include the Marcus Center, Propel Autism, and private therapies.
With this new study, the largest of its kind, researchers hope to identify mechanisms that can be changed to optimize and generate new therapies.
Children’s Healthcare of Atlanta behavioral and mental health and neurosciences research programs, Emory University School of Medicine’s department of Human Genetics, and the Tri-Institutional Center for Translational Research in neuroimaging and data science (TReNDS) plan to engage 7,500 children from birth to 12 years of age to participate.
Current treatments are behaviorally based according to Dr. Ami Klin, director of the Marcus Autism Center. By enabling medicine interventions, doctors can lessen the severity of symptoms and improve response to treatment in children with profound autism. There’s a possibility to prevent profound disability from emerging in the first place, Klin said.
“By studying profound autism at multiple levels – in behavior, brain networks, and basic biology – one of the key goals is to identify new biological targets for drugs and other therapies: to support learning and adaptability, to make symptoms less severe, and to promote better quality of life for children and families affected by profound autism,” Klin said.
Led by Klin, researchers at Marcus Autism Center will conduct a clinical trial by studying children from birth, before symptoms emerge, as well as before and after treatment is delivered.
“This represents the largest scientific effort to date to study children with profound autism from infancy to early adolescence,” said Dr. Klin. “We hope to generate a moonshot factory of solutions for a community that carries the most severe symptoms of autism and has been underrepresented in autism research.”
Marcus Autism Center is a not-for-profit organization and a subsidiary of Children’s Healthcare of Atlanta that treats more than 5,000 children with autism and related disorders a year.