Infants who have an older sibling with Autism Spectrum Disorder (ASD) are at higher risk for the condition than the general population. About 1 in 20 infant siblings will develop an ASD diagnosis. By following these at-risk infants, the Baby Siblings Research Consortium (BRSC) is discovering the earliest signs of ASD, its early risk factors, and new methods for
early diagnosis. On January 25 and 26, members of the BRSC met in San Diego, Calif. for their annual meeting to review the year's research progress and discuss future collaborative directions. The BSRC was formed in 2003 as a joint initiative between Autism Speaks and the National Institute for Child Health and Human Development, and now includes 23 researchers at 19 institutions worldwide.
This year's meeting continued the group's discussions on studying regression in infant siblings. Being able to make better predictions about which children will show regression is an urgent question in autism research. However, regression has so far been very difficult to investigate, primarily because most studies up to this point have had no choice but to use retrospective methods (usually parent recall). Studying regression with prospective methods, in which researchers can use objective measures to collect data on development as it is happening, will be a much more powerful approach. Therefore, this year's symposium on regression compared traditional retrospective methods of measuring regression (e.g., Autism Diagnostic Inventory, or ADI-R) to prospective methods such as the MacArthur-Bates Communicative Development Inventory (CDI) and the Mullen Scales of Early Learning. The researchers also explored novel methods to examine regression, such as direct coding of behaviors like eye contact or using on-line diaries to capture information. The hope is that by being able to determine the factors associated with regression, clinicians will be able to understand which children are susceptible to it.
Later, the consortium broke out into smaller groups to brainstorm and share best practices on two important topics: studying brain function using non-invasive techniques such as EEG and eye tracking, and discussing clinical issues related to early detection, such as sharing information with families and the diagnostic stability of symptoms. These smaller breakout sessions were a new feature of the annual meeting that allowed more focused discussions on topics in order to better shape research, policy, and communication strategies. Attendees were very positive about these breakout groups, which will likely become a fixture of future BSRC annual meetings.
The second day of the meeting focused on development of collaborative projects and the resources and infrastructure needed to facilitate such endeavors in the future, such as the development of a BSRC legacy database. It is difficult for any one site to follow enough children to answer many of the critical questions in the field, so collaboration across sites and pooling of information and data is critical to determine best practices in the important areas of early detection, diagnosis and intervention. Sally Ozonoff, Ph.D., professor of Psychiatry at the M.I.N.D. Institute, University of California-Davis, author of several key publications on early autism detection, and current Chair of the BSRC, remarked “The investigation of large cohorts of high risk siblings, studied from birth through the window of autism risk, provides an invaluable opportunity to make discoveries that will impact better and earlier detection of autism. The BSRC is dedicated to understanding the earliest markers and multiple causes of autism spectrum disorders (ASD) through novel and innovative research, collaboration and sharing of ideas and data.”
For more detailed information on the BSRC, click here.