In 2015, a group of researchers at Duke University described a group of 11 children and adolescents with history of new-onset or worsening autistic characteristics. The symptoms these patients experienced varied but included cognitive decline and new-onset insomnia. The average age of regression was ~11 years old in this study. These researchers coined the term "Down syndrome disintegrative disorder" as an umbrella term to describe the decline seen in these patients. Today, the condition is commonly referred to as Down syndrome regression disorder (DSRD).
DSRD has gained increased awareness from the medical community in the last decade. New research studies are being performed to better understand what the features of DSRD, what causes DSRD, and treatment options.
Photo from National Society of Down Syndrome: https://www.ndss.org/?gclid=CjwKCAjwxZqSBhAHEiwASr9n9DPg4-4hWuMhgzMsXNcxH5uZ2miK5PnScHWAM5khSF3jfjOkr_5uhRoCXLkQAvD_BwE
The average age of onset varies in the research. One source reports the average age in published cases is 15.8 years. In general, the age of regression is thought to occur in adolescence to early-adulthood.
The main features seen in DSRD are
Changes in behavior
Loss of acquired skills
Changes in ability to maintain attention
Changes in internalizing behaviors
Research regarding the causes of DSRD is ongoing. Based on current research, it is unlikely that one cause explains all cases of DSRD.
Immune mediated process
Psychological stressors that "trigger" regression
People with DSRD may take months to years to recover from the regression. About half of patients do not return to their baseline before the decline. Prognosis also depends on the possible cause (immune vs. psychological) and treatment course.