What the Autism Sisters Project Is—and How You Can Help
The Autism Science Foundation is looking for sisters of siblings affected by ASD in order to test their hypothesis that some girls are "carrier sisters."
The Autism Science Foundation (ASF), a non-profit that funds research, is working on a paradigm-shifting initiative called the "Autism Sisters Project," and they need your help. The organization is looking for sisters of siblings affected by ASD in order to study the "Female Protective Effect." Their hypothesis is that some girls are carrier sisters—or females who do not have clinical symptoms, but still carry the genetic deletions and duplications that cause the disorder.
Alison Singer, founder and president of the ASF, has an 18-year-old daughter and a brother on the spectrum. Given her family history, Singer's very excited about this new direction for autism research. "For years, we've looked at the 4-1 ratio of boys to girls on the spectrum," she says. "For a long time the thinking was that autism might have something to do with being male. We've looked at testosterone, x chromosomes, and other male-specific factors, but now, the thinking's being turned on its head. We're wondering what is it about being female—is it hormonal, something to do with estrogen perhaps—that prevents autism genes from being expressed."
ASF is excited about the outcome of this research, but for now they're limited by how much genetic data they have. The more unaffected sisters they can study, the sooner they'll have answers to their questions. "If we can figure out what protects this cohort of girls, we could potentially protect both boys and girls on the spectrum—and our hope is that whatever the Female Protective Factor is, it could be harnessed to improve learning, communication, and perhaps alleviate the debilitating symptoms of autism," she says.
ASF is looking for unaffected sisters to participate in the study. Right now they're just set up to gather data in the New York area, since they are partnered with the Seaver Autism Center at Mt. Sinai, but they're hoping to expand their reach soon. If you have a child who meets the criteria of the study or know someone who might be interested, please contact the Seaver Autism Center by phone at 212-241-0961 or by email at firstname.lastname@example.org.
Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton.