Posted by Alycia Halladay, Autism Speaks senior director for environmental and clinical sciences.
This week, I had the pleasure of attending the tenth annual meeting of the Autism Speaks Baby Siblings Research Consortium (BSRC). I find myself inspired at the tremendous progress this group of researchers has made since it formed in 2003, with the support of Autism Speaks and the National Institute of Child Health and Human Development. The BSRC now includes 26 investigators from around the world. They are leading experts in clinical psychology, developmental psychology, pediatrics and environmental sciences. The consortium also receives input from outside scientific experts as well as parents.
Our “baby sibs” researchers have focused their careers on discovering and understanding the earliest signs of autism in infants born into families who already have one or more children on the autism spectrum. Because autism tends to run in families, we know that these infants are at high risk for developing the disorder.
Most of what we know about autism in children under 6 months comes from this group’s research and discoveries – and those of a new generation of researchers that they are training. These discoveries, in turn, have led to the development of targeted early interventions that are producing significant improvements in development and function.
In 2010, Autism Speaks funded the creation of a BSRC database. It contains the rich array of developmental information coming out of each member’s research. This now includes information on more than 3,000 children up through the time of diagnosis.
This dataset is so powerful because it allows us to pool findings from smaller studies into a larger collective. Combining the findings on smaller groups of children into a larger information set increases the reliability of the results.
Combining Information to Power Discoveries
For instance, the consortium used its combined database to determine that one in five baby siblings develops autism. This is significantly higher than the 1 in 88 estimated for the general population. Going further, the data showed that another one in five baby sibs have developmental impairments that fall short of an autism diagnosis but may warrant early intervention. (Read more about these findings here.)
Such findings have revolutionized the way we understand autism. They have also expanded how we identify young children who need early intervention.
In the last few years, several BSRC researchers have built on their discoveries to earn large government research grants to advance understanding of brain development and gene-environment interactions in high-risk families. Already they are discovering autism-related differences in brain structure that emerge earlier than outward behaviors. Some of these differences in infant brain activity may be hugely important for guiding personalized therapies.
Other BSRC members are tracking environmental influences that occur long before birth. Still other researchers are developing new tools that clinicians can use for earlier identification of autism. Such progress would not possible without combining our collective resources.
The BSRC’s large dataset is also helping its researchers unravel some of the complexities of autism’s earliest signs and symptoms. For instance, while large amounts of information allow researchers to make conclusions about infant sibs as a group, it’s also becoming clear that children within this group follow different patterns of development. We need to understand how and when these differences emerge to further improve how we intervene with targeted therapy.
So what now? Scientists and clinicians need a way to understand the broad spectrum that we call autism – and to do so as early in life as possible. This will include identifying genetic risks and how they interact with environmental influences to increase or lower autism risk.
I’m confident that the BSRC’s findings, together with Autism Speaks Early Access to Care Initiative, will improve progress in these areas and do so beyond high-risk families. They will improve how we provide care, work with families and maximize outcomes for all individuals with autism.
The BSRC has also taken on the responsibility of developing ethical guidelines on how to work with and inform families participating in autism research. In the coming weeks, look to this blog for a special consensus report on what families should know about the research.