It was a natural fit. The Moyer family of Sag Harbor has four children, including three daughters, one of whom has an autism spectrum disorder. And the Autism Science Foundation was looking for families just like the Moyers to help out with a research endeavor.
Patty Moyer learned about the foundation’s Autism Sisters Project while seeking information through Mount Sinai Hospital to help her daughter Emily, 7, who is on the autism spectrum. The project is two-fold. According to the Autism Science Foundation, it gives the unaffected sisters of children with autism the chance to take an active role in researching what is called the “female protective effect,” which refers to the data that shows boys are more frequently diagnosed with autism spectrum disorder (ASD) than girls are. And the project seeks to harness that protective factor to help people of both sexes who are diagnosed with ASD.
“We have been doing lots of research. We found out about the Autism Sisters Project, and we are all for it,” Ms. Moyer said, calling the project “a fabulous experience.”
The Autism Science Foundation has been working with Emily and her sisters Samantha, 11, and Julianna, 9, to do genetic sampling. Emily also has a brother, Eric, 12. The research is typically conducted by collecting DNA samples through spit, although the Moyers have also given a few of their children’s baby teeth to the researchers.
“They are looking at the gene inconsistencies — why someone has ASD, as opposed to a typically developing child,” said Ms. Moyer, herself a teacher in a neighboring school district. She has recently returned to school to become a board-certified behavior analyst.
Dr. Alycia Halladay, chief science officer of the Autism Science Foundation, said the lack of genetic data is a limiting factor in the understanding of autism, but that the Autism Sisters Project is helping to “eliminate that barrier and move the science forward.” The foundation has put out the call for more families who have both a child diagnosed with autism and an unaffected daughter to participate in the research. Interested families may find more information online at autismsciencefoundation.org/what-we-fund/autism-sisters-project/.
“We are learning more about how autism affects males and females differently, as well as the underlying etiological factors behind these differences,” Dr. Halladay said in a statement. “This is an exciting and promising opportunity to leverage that understanding for deeper research into potential factors that could have a significant impact on the lives of many people with autism.”
On a typical day in the Moyer household, Emily’s father, Tom Moyer, a Pierson graduate, helps her get on the bus bound for Sag Harbor Elementary School, where she spends the day learning in an inclusion classroom. Emily’s siblings help her out by keeping her “on task” if she gets distracted while at home, and on Wednesdays, they take therapeutic horseback riding lessons at Wolffer Estate.
Ms. Moyer said the Autism Sisters Project is an important effort.
“Something does need to be done as far as early diagnosis,” she said. “The earlier you can diagnose this, the chances of having a productive life for the child increase substantially with early intervention.”