Autism’s recurrence within families is of tremendous interest to both researchers and families, and our “High Risk Baby Siblings Research Consortium” continues to study this and other important questions regarding the risks, causes, prevention, and early treatment of autism.
We support this research consortium in collaboration with the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). In 2003, Alice Kau, of NICHD, and our own VP of Scientific Affairs Andy Shih organized the consortium. I joined with a leadership role in 2005. Since then, the group has grown to include 25 leading autism researchers across 21 medical centers in the United States, Canada, Israel, and the United Kingdom.
They all share the goal of studying the earliest symptoms of autism spectrum disorders (ASDs). They are able to do so because of the generous participation of families with infants and at least one older child on the autism spectrum. These families are so important to research because of the relatively high likelihood that autism will recur among younger siblings.
By following the development of these young children, our consortium researchers are able to do much more than give us more accurate information on recurrence rates. For example, they are making exciting progress in increasing understanding of how and when autism signs and symptoms first appear. This includes insights into the pattern we call “regression,” which involves a loss of skills in an infant or toddler who appeared to be developing normally. As a group, the consortium has published a number of articles to help guide pediatricians and other primary care doctors in how to approach children and families already affected by autism. Their research into early signs and symptoms, for example, has helped clinicians diagnose and provide treatment as early as 12 months of age.
Several of the Baby Sibling Consortium researchers also participate in another important Autism Speaks group, the Toddler Treatment Network. It has a deeper focus on early signs and symptoms, particularly as they relate to developing earlier interventions that may actually prevent the development of some or all autism symptoms.
Families with recurrent autism are crucially needed to help our researchers identify the genes and other influences that increase the risk that children will develop autism. By allowing our researchers to track progress beginning in pregnancy, for example, families provide insights into such risk factors as parental age at conception, and maternal infection and nutrition during pregnancy.
Our researchers are also tracking brain development and identifying so-called biomarkers (such as distinctive brainwave patterns) for earlier and more accurate diagnosis. And, yes, this research can also help us look at whether certain patterns of vaccination make any difference in the risk of autism among children genetically predisposed to the disorder.
Taken together, a better understanding of early signs and symptoms has led to earlier, better accurate diagnoses of ASD along with important knowledge of what causes autism. This research is not possible without the group working together, and without the valuable support of the National Institutes of Health, and most importantly, the families who donate their valuable time to this research.
Interested in learning more—and perhaps participating in the research? Please check out our list of Baby Sibling Research Consortium researchers and contact one in your area.