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.
Parents of a child with autism are understandably concerned about the likelihood that their subsequent children will be affected. Autism Speaks and its legacy organization, the National Alliance for Autism Research, have been funding research on younger siblings for nearly 15 years– to help us better understand their development.
In 2003, we began organizing and co-funding a very special collaboration—the High Risk Baby Siblings Research Consortium—in partnership with Eunice Kennedy Shriver National Institute for Child Health Development.
This week, we announced the results of the consortium’s largest ever siblings study. The researchers followed younger brothers and sisters from infancy through the preschool period, when autism diagnosis becomes possible. The study revealed a markedly higher risk among younger siblings than had been previously reported.
As the autism community absorbs the news, let me give you some background on the quality and importance of this research—and what it means for parents.
Our “Baby Sibs” researchers are an international network of clinical researchers who have been pooling information from studies of affected families in 21 sites in the US, Canada, Israel and the UK. Alycia Halladay, Autism Speaks director of research for environmental sciences, and Andy Shih, vice president of scientific affairs, have led the consortium from the start and continue to coordinate its activities.
In the study making headlines this week, the consortium researchers assessed 664 infants. Each had at least one older sibling diagnosed with an autism spectrum disorder (ASD). They found that 1 in 5 babies with an older sibling on the spectrum will likewise be affected—more than double previous estimates. The rate was higher among younger brothers—1 in 4, versus 1 in 9 for younger sisters. And autism affected nearly 1 in 3 infants with more than one older sibling on the spectrum. (Previous estimates came out of much smaller and sometimes less reliably conducted studies.)
So what does this mean for parents?
If you have an older child on the spectrum and you are concerned about your infant, talk to your pediatrician about your baby’s risk and your desire for close monitoring. And if you have any concerns about your child’s development, don’t wait. Speak with your doctor about screening.
Here are links to a number of helpful resources:
* Recent research funded by Autism Speaks shows that a one-page baby-toddler checklist can be used effectively as early as 12 months as an initial screen for autism and other developmental disorders. The screener is available here.
* As a parent or caregiver, one of the most important things you can do is learn the early signs of autism and understand the developmental milestones your child should be reaching. You can see the Learn the Signs guidelines on our website, here.
* Finally, families with one or more children on the spectrum can contact their nearest “Baby Sibs” consortium researcher if they would like to participate in this important research. The list is on our website, here.
By monitoring your infant closely and promptly beginning intervention if signs of autism appear, you can ensure that your child will have the best possible outcome.
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Autism risk ‘high’ for kids with older sibling with the disorder. Autism Speaks’ Alycia Halladay, Ph.D., provides perspective of NPR’s All Things Considered. To listen to the segment, visit here.
“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community. We received over 3000 responses when we asked what science questions were on your mind.
Studies of sibling recurrence done in the past decades usually reported between 2-6% of younger siblings of children with autism were eventually diagnosed with autism. However, it was thought that these numbers may be an underestimate, because they included low numbers of families and looked at just autism in the child and the younger sibling.
Because of the elevated risk of autism in younger siblings, new research designs have allowed for prospective, longitudinal research of individuals “at risk” for autism – that is they have an older sibling with an autism diagnosis. Autism Speaks supports a consortium of these researchers known as the High Risk Baby Siblings Research Consortium or BSRC. Using this design, the recurrence of autism as well as other disorders, including language problems, can be ascertained. Recent reports have indicated that about 10-15% of younger siblings of children with autism are diagnosed with an ASD. In addition,, a recently published study by a BSRC investigator working together with the Interactive Autism Network (IAN) found that 20% of siblings (without ASD) had delayed language development. Together, this adds to evidence that autism and related developmental delays in language have a genetic component. It is important to keep in mind that the information about ASD recurrence risk rates cited in this article are based on population-based statistics. The ASD recurrence risk rates for individual families vary.
Parents with who have a child with ASD who are concerned that a sibling may be showing symptoms of ASD should bring their concerns to their pediatrician or primary health care provider. Other resources include the following:
- Visit the Autism Speaks website more information about early signs of autism http://www.autismspeaks.org/whatisit/learnsigns.php
- Participate in a research study that provides early screening and diagnosis of autism will allow you to work with clinicians trained to provide identification and intervention of autism for as young as 12 months of age. Such research projects include the EARLI study: www.earlistudy.com and the IBIS network www.ibis-network.org. A full list of the BSRC can be found here: http://www.autismspeaks.org/science/research/initiatives/babysibs.php
- Visit the Autism Speaks Resource Guide to find a physician or specialist near you http://www.autismspeaks.org/community/resources/index.php