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Research on High Risk Baby Sibs

Autism Speaks High Risk Baby Siblings Research Consortium (BSRC) brings together research groups from around the world with the mission of discovering the earliest predictors of autism. This work not only advances understanding of how autism develops. It also promises to open the door to earlier diagnosis and treatment – with the potential to transform lives.

The BSRC builds on the diverse expertise and interests of its research teams by fostering collaboration and information sharing. Already, it has accelerated progress in early detection and intervention.

UPDATE: November 4, 2013

Parents of high risk infants should read the following review of the science from the BSRC here. Accompanying references can be found here.

Highlights of coalition achievements, as well as more in-depth information on the BSRC, can be found in its most recent annual reports. (Click the links to download.)

* 2012 Annual Report
* 2011 Annual Report
* 2010 Annual Report
* 2009 Annual Report

Why Study Baby Siblings?

Because certain genes predispose to autism, this developmental disorder tends to run in families. Indeed, in 2011, a large BSRC study found that the younger siblings of children with autism have close to a 1 in 5, or 20 percent, chance of developing an autism spectrum disorder (ASD). This was considerably higher than previously thought. By comparison, the risk of autism in the general population currently stands at 1 in 68.

In 2012, BSRC reported further findings on the “baby sibs” who did not go on to develop ASD. By age 4, just over a third (35 percent) had some autism behaviors or delays in reaching their developmental milestones. By comparison, such behaviors and delays affected fewer than 18 percent of 3-year-olds from families unaffected by autism.

Such findings are vitally important for informing parents and doctors of the need to monitor younger siblings for delays and problems that can be addressed with early intervention.

In addition, by participating in research, families affected by autism are allowing investigators to study the disorder at its earliest stages. In doing so, BSRC researchers are identifying the brain and body pathways that lead to autism.

Importantly, their findings are also informing the development of clinical guidelines for earlier diagnosis and intervention. 

 

Who Makes Up the BSRC?

The BSRC currently consists of 25 principle investigators with research teams spanning 21 institutions across the United States, Canada, Israel and the United Kingdom. (You can find a complete list here.) They study early autism risk factors using a variety of methods, including behavioral and neurobiological measures.

 

Who Supports the BSRC?

The consortium is a partnership between Autism Speaks and the National Institutes of Health, led by the National Institute of Child Health & Human Development. Autism Speaks began funding baby sibling research in 1997 and has since committed over $7 million to its research and programs. You can explore the BSRC projects that Autism Speaks is funding here.

Just as important are the families whose participation makes this research possible. To date, more than 2,500 infants from high-risk families have participated in BSRC research. This is the largest study cohort of high-risk families in the world. In addition, BSRC study participants include more than 1,500 “low risk” infants and toddlers from families without a history of autism.


How Can This Research Advance the Search for Environmental Risk Factors?

In 2009, Autism Speaks committed $5 million to fund a collaborative research project that promises to shed light on the genetic and environmental risk factors for autism. The project expands and links two large-scale, multi-site studies – the Early Autism Risk Longitudinal Investigation (EARLI) and the Infant Brain Imaging Study (IBIS). In doing so, it facilitates the collaborative study of more 2,000 infant siblings of children with autism.

In 2012, Autism Speaks furthered this work with its inaugural Philip and Faith Geier Autism Research Grant in Environmental Sciences. The grant – awarded to EARLI researcher Dani Fallin – will fund an investigation of the prenatal and post natal influences that may increase or decrease autism risk.

Also see these related blog posts, science news stories and feature profiles:

Study Looks Beyond the Risk of Autism in Baby Siblings

Baby Sibling Outcomes: Beyond Autism

Early Nonverbal Cues to Autism Risk

Highlights from the Baby Sibs Research Consortium Meeting

Baby Siblings Research Consortium Annual Report

Half Sibs & Autism Risk

High-Risk Families Advance Autism Research through New Biorepository

Researchers See Differences in Autism Brain Development as Early as 6 Months

Autism Predisposition among Children of Adult Siblings 

Infant Brain Activity Flags Autism Risk

Baby Siblings at Risk

Hunting for Autism’s Earliest Clues

Baby Siblings at Risk

Increased Risk of Autism in Siblings: Transcript of Live Chat with Alycia Halladay

Brain Activity Differs in Infant Siblings of Children with Autism

Development in Younger Siblings: Beyond Autism

The Baby Sibs Consortium: Important Findings Ahead

Infant Brain Activity Flags Autism Risk

Autism Recurs in Families More Often than Previously Realized

New Findings on Risk of Autism in Siblings – What do they mean for parents?

High Risk Families Advance Autism Research through new Biorepository

Head Lag a Red Flag?

For more information and resources, please also see our related webpages on the Autism Speaks Toddler Treatment Network, the Autism Speaks Environmental Factors in Autism Initiative, How is Autism Diagnosed?, Learn the Signs of Autism, and this website’s interactive M-CHAT screening tool for toddlers.