Over the past month in our 4-part series “Getting Involved in Shriver Center Research,” a common theme has emerged — the notion of “giving back.” For Joyce, the mother of a 16-year-old daughter with Asperger Syndrome (AS), giving back influenced her decision to enroll her daughter in “Express Yourself” (EY) and “Look Who’s Talking” (LWT), two studies on expression and attention in teens with AS and high functioning autism (HFA). In addition, the “Detection Study” and “Focus of Attention” are two more great studies that explore attention and autism in children and teens.
For parents, giving back matters
Although Joyce grew up in New York, her daughter’s early life in Asia produced a very late diagnosis. “I am grateful to live in the U.S. where research is much bigger than in other countries,” she explained. “Studying AS and HFA, particularly in girls, motivated us to take the 40-minute drive.”
For teens, receiving a stipend matters
When Joyce found the EY study online, she “made a deal” with her daughter by appealing to her desire to be compensated, since as a teen, “she ‘didn’t mind’ the pocket money.” The study maps facial expression in teens with AS and HFA by using the same motion capture technology (“MoCap”) used in movie animation (view demo video). EY explores whether facial expression in these teens is different and possibly stigmatizing. The tiny reflective stickers used to map facial movement “didn’t bother” her daughter at all, according to Joyce.
For the IRB, safety matters
Joyce stressed her comfort knowing that these studies were safe based on the rigorous review from UMass Medical School’s Institutional Review Board (the “IRB”), which requires stringent human studies protections. “She was in control. She could ‘assent’ to being in the study or could withdraw at any time,” Joyce explained. “Knowing this should put parents’ minds at ease.”
Joyce’s message to parents: “Doing it now!”matters
When asked what else parents should know, Joyce simply said, “Do something now.” “We don’t think about what our forerunners have done so our kids can benefit,” she continued. “The more data there is, the better we can understand autism.”
A final thought
I have enjoyed sharing my and other parents’ perspectives answering the prevailing question about getting involved in research, namely, “What’s in it for us?”. By getting involved in research, we can help move the science forward to help children like ours progress and benefit in the future. Thanks for reading!
For more information about Shriver Center studies looking for participants, please visit https://www.umassmed.edu/shriver/recruit.aspx.
About the author
Elaine Gabovitch is the Director of Family & Community Partnerships at the E.K. Shriver Center and an instructor in the Department of Family Medicine & Community Health of UMass Medical School and Family Faculty for the Leadership Education in Neurodevelopmental Disabilities (LEND) Program at the Shriver Center.