Posts Tagged ‘High Risk Baby Siblings Research Consortium’

A Message from our Chief Science Officer

September 6, 2011 4 comments

Dear all,
I hope you enjoy our report on Science Department Monthly Highlights, focusing on major scientific advances and new grants funded by Autism Speaks, as well as the science staff’s media appearances and national/international meetings.  Given the size and scope of our science department, we aren’t attempting a comprehensive report here. If you are interesting in knowing more about activities such as tissue donations, participation in clinical trials, and our research networks (e.g. Baby Sibs Research Consortium), please contact me and our science communications staff at  Enjoy! 

Best wishes,  Geri

  The dog days of August were anything but quiet for the science department. Highlights included the release of the first major report of the Autism Speaks Baby Siblings Research Consortium. The world learned that autism recurs in families at a much higher rate than previously estimated. For perspective and guidance, the national media turned to our director of research for environmental sciences, Alycia Halladay, PhD. Over the course of 24 hours, Alycia made appearances on CNN, MSNBC, and NPR’s “All Things Considered;” was interviewed by reporters for numerous major papers, news services, and magazines; and even found time to answer parents’ questions via live webchat (transcript here)—the first of an ongoing schedule of live chats to be hosted by science department leadership. Geri Dawson, PhD, our chief science officer, wrote a blog that focused on what the new findings mean for parents.

The science department also hosted a two-day Autism and Immunology Think Tank at the New York City office, with some of the nation’s leading thought-leaders in immunology and inflammatory diseases lending fresh insights to aid our planning of research exploring the immune system’s role in autism spectrum disorders. Glenn Rall, PhD, Associate Professor, Fox Chase Cancer Center and member of Autism Speaks’ Scientific Advisory Committee, and Alycia organized and led the meeting which was attended by senior science staff and experts who study the role of the immune system and inflammation in multiple sclerosis, Parkinson’s Disease, Alzheimer’s Disease, Multiple Sclerosis, inflammatory bowel diseases, and brain development.

Here, then, is the science department’s abbreviated rundown of August highlights:

Major scientific publications published this month supported with Autism Speaks funds and resources
* Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study. Ozonoff S, Young GS, Carter A, et al. Pediatrics. 2011 Aug 15. [Epub ahead of print]
* Coming closer to describing the variable onset patterns in autism. Dawson G. J Am Acad Child Adolesc Psychiatry. 2011 Aug; 50(8):744-6.
* Mortality in individuals with autism, with and without epilepsy. Pickett J, Xiu E, Tuchman R, Dawson G, Lajonchere C. J Child Neurol. 2011 Aug;26(8):932-9.

Autism Speaks science staff in the national media
* Alycia gave perspective and guidance related to the results of the Baby Siblings study in The New York Times, Associated Press, USA Today, CNN Health, Time, Healthday, Huffington Post and WebMD; and made related appearances on CNN, MSNBC, and NPR’s “All Things Considered.”
* VP of Scientific Affairs Andy Shih was interviewed by the Philadelphia Inquirer, Parents Express and Education Week about Hacking Autism.
* Alycia was interviewed by Fit Pregnancy about studies on prenatal and early post natal risk factors. She was also interviewed by regarding proposed changes in autism-related entries of next year’s much-anticipated DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, fifth edition).
* Andy and Michael Rosanoff, associate director of public health research, were interviewed by Newsweek for a story about the Minnesota Somali prevalence study.
* Geri was interviewed by Parents magazine for a story about early screening and early intervention.
* VP of Translational Research Robert Ring was interviewed by Discover magazine for a story on the use of mice models in autism research.
* Geri was interviewed by the prestigious journal Lancet regarding autism clusters in California.
* Andy was interviewed by CBS 60 Minutes on innovative autism technology.
* Geri and Simon were interviewed by ABC News on the use of avatars in autism treatment.
* Autism Speaks Global Autism Public Health Initiative continued to generate world headlines, including  this Wall St Journal interview, around its Conference on Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia, which resulted in the adoption of the “Dhaka Declaration” presented to the United Nations.

Science webchats
* On August 15th, the science department hosted its first live webchat, with Alycia fielding questions related to the widely covered release of the Baby Siblings Research Consortium’s findings of unexpectedly high rates of autism recurrence in families. Nearly 1,000 live viewers joined the chat and submitted 299 questions and comments. This is the first of an ongoing series of live web chats by senior science staff.

Science leadership at national and international meetings

* Geri, Andy, Rob, Michael, and VP of Scientific Review Anita Miller Sostek attended the treatment grant review meeting in San Francisco, Aug 1-2.  86 applications focusing on developing and evaluating new biomedical and behavioral treatments were reviewed by a panel of scientific experts and stakeholders.  Ann Gibbons, executive director, National Capital Area, offered her expertise as a consumer reviewer on the panel.
* Michael attended the World Congress of Epidemiology, in Edinburgh, Scotland, Aug 7-11. This year’s theme was “Changing populations, changing diseases: Epidemiology for Tomorrow’s World,” and the International Clinical Epidemiology Network Team, which Autism Speaks co-funds, presented on an array of research efforts. In addition, Danish researchers presented data on the increased risk for autism in children with low birth weight and other birth-related conditions.
* Geri and Alycia hosted an Autism and Immunology Think Tank, Aug 22-23, in NYC (described above).
*The Autism Treatment Network leadership held its semi-annual planning meeting in the NYC offices Aug 23-24, with Geri, Clara, Rob, Dr. Dan Coury, Medical Director, ATN, Jim Perrin, MD, Director, Clinical Coordinating Center, ATN, and Nancy Jones attending.
* The science department senior leadership and Mark Roithmayr held a strategic planning meeting with members of its scientific advisory committee in the NYC offices, Aug 24.  Among the advisors attending this meeting were Joe Coyle, MD, Chair, department of psychiatry, Harvard Medical School, Gary Goldstein, MD, president, Kennedy Krieger Institute, Steve Scherer, PhD, director, Centre for Applied Genomics, University of Toronto, and Roberto Tuchman, MD, associate professor of neurology, Miami Children’s Hospital.

*On Sunday, August 28th, Geri Dawson presented at the Triennial Conference of the Royal Arch Masons, a group that makes a substantial annual donation to support the work of the Toddler Treatment Network.

The BabySibs Consortium: Important Findings Ahead

August 30, 2011 12 comments

Posted by Alycia Halladay, PhD, director of research for environmental science, Autism Speaks

Last week, Autism Speaks High Risk Baby Siblings Research Consortium made the news with the findings that autism recurs in families much more frequently than had been realized.

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.

So I’d like to take this opportunity to tell you more about this remarkable group of researchers and their ongoing research–made possible in no small part by your volunteer and donor support.

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.

Autism Risk ‘High’ for Kids with Older Sibling on the Spectrum

August 16, 2011 Leave a comment

 Autism Speaks’ Alycia Halladay, Ph.D., provides perspective on NPR’s All Things Considered. To listen to the segment, visit here.

Increased Risk of Autism in Siblings LIVE Chat Transcript

August 16, 2011 9 comments

Autism Speaks’ Alycia Halladay, Ph.D., hosted a LIVE Facebook Chat on the just released study showing a high risk of autism among the younger siblings of children on the spectrum. Dr. Halladay organized and continues to help lead the High-Risk Baby Siblings Research Consortium that conducted the research and which continues to study the factors that predispose some families to autism recurrence. Please see our news item and a special commentary from Autism Speaks’ Chief Science Officer Geri Dawson, Ph.D.

Hello Everyone! Thanks for joining our chat!
Hi there. My name is Alycia Halladay, Director of Research for Environmental Sciences here at Autism Speaks. Autism Speaks funded the analysis released today, and we work very closely with the Baby Sibs Research Consortium, who collected the data and works with the families. I am happy to answer questions and excited to hear your thoughts.
New findings on risk of autism in siblings – What do they mean for parents?
Experiencing technical difficulties.
please hang on
We received several questions throughout the day. We will start with this one question
FROM SHAMIMP: What is the definition of sibling in this research, was it children having the same set of parents, mother and father? What is the percent of ASD occurrence for step brother and step sisters where they have the same father or different mothers or same mother and different fathers?
In this study, siblings had the same mother and father. We don’t yet have the numbers for children with one parent or the other being different. In science, this is called a parent of origin effect, where the genetics can be tracked to one parent or the other. The BabySibs Research Consortium hopes to study this in the future.
Comment From Guest

I have a 4 year old on the spectrum I also have a 2 year old and a 2 month old should I have the other 2 checked and if so when

As soon as you suspect that something is wrong, you should have a pediatrician or other healthcare provider evaluate your child for developmental disorder. Symptoms of autism emerge as early as 6 months of age. Here are some helpful links.
Here is a link to an early screener that you can fill out and bring to your doctor.
FROM ANGEL: I was wondering if there have been studies on boy-girl preemie twins.
Yes, the rate of autism is higher in infants who are born prematurely, and the BabySibs Research Consortium is looking at prematurity as a risk factor for autism. Studies consistently show that boys have a higher risk of autism, up to four times higher than that of girls.
Comment From MaryAnn

Do we know of ways to decrease the risk in pregnancy for future siblings at all?

In addition to family history, there could be many nongenetic influences to the development of autism. We are currently investigating these. A study came out that showed that prenatal vitamin use protected against autism.
Comment From Guest

The new findings in the siblings study indicate that genetics play a more influenctial role in family autism. would this suggest that environmental factors are less of an influence in autism? We have a 5 yo with ASD and a 4 month old. If we are carrying the genetic markers for autism could we influence whether our youngest manifests autism by avoiding potential environmental factors?

This study did not look at nongenetic factors. But in fact many siblings do share nongenetic influences. If you already have a child with autism, you should tell obstetrician and follow their guidelines and advice about a healthy safe pregnancy.
Comment From Lyda

I have a spectrum son and a recently diagnosed daughter. Was research done on the level of autism in the sibling and what does this mean for my newborn son (3rd) child?

In this study, the level of functioning was monitored in the older sibling diagnosed with autism and it did not influence the outcome of the younger sibling. In other words, the level of function in the older child did not account for the risk of autism in the younger child.
Comment From Cynthia

Where environmental factors presented at all in this study? For instance one child was born in one state and the second child in another area?

These factors were not examined in this report. However, the BabySibs research consortium is studying prenatal and infant influences in addition to family history. Here’s a link to that
Comment From Christin

Is there anything we can do from a preventative stand point?

Autism Speaks is supporting research looking at very early intervention. It may be possible to stop the progression of autism or prevent some symptoms from developing. So knowing the early signs is important. Early diagnosis leads to early intervention. Here again is the link to early signs and an early diagnosis checklist.
Comment From Guest

i have a 4 year old boy. I am no longer with his father. the man that i am with now and i have talked about having a child of our own…a big part of me really wants to have a child with him, a bigger part is not wanting to for fear of having another autistic child….is there any way to know what the chances are of me having another autistic child. if only there was prenatal testing available for autism, that way parents can brace themselves

While it’s important to know that family history is a strong influence in the development of autism, there are other nongenetic factors. Prenatal testing is not going to provide an accurate diagnosis. We don’t know how genes interact with other influences. But knowing that your next child may be at higher risk enables you to look for signs early and seek intervention that can improve function or possibly prevent some symptoms.
Comment From Bonnie

Hello I am a mom to 2 boys with PDD-NOS. These new findings are right on. My question is how will this change anything regarding early intervention or early screening?

Bonnie, we urge parents who have a child with autism to make sure they’re vigilant in monitoring the development of their subsequent children and to advise their physicians to do so as well–and to listen to their parental concerns. We hope that by doing so, all children who show early warning signs of autism will be monitored just as closely.
Comment From dsaie

Have there been any studies pertaining to the likelyhood of a sibling of an autistic person having a child with autism?

We know that family history is a risk factor for autism. But we don’t know the rate in offspring of people with autism or the offspring of relatives of people with autism. So we don’t know these numbers, but it’s reasonable that they would be higher than the 1 in 110 risk for the general population.
Comment From Anna

My 5 year old son has autism. What are the chances of my 11 month old girl having it and what should i watch for?

According to this study, if an older child has autism the chances of a younger sister being diagnosed are 1 in 9. So you should learn the early warning signs of autism by clicking the link below and also check out the video glossary that has clips of young children both affected and not affected with autism. Here again are the links:
Comment From Mitch

Is there any way of telling which parent carries the gene. I am dating a women with a 16 year old autistic boy and we were wondering should we want to have a child ourselves.

In this study, siblings had the same mother and father. We don’t yet have the numbers for children with one parent or the other being different. In science, this is called a parent of origin effect, where the genetics can be tracked to one parent or the other. The BabySibs Research Consortium hopes to study this in the future.
Comment From Guest

Did the study show a difference if the older sibling with a ASD had regression autism, where they developed typically then regressed, versus autism where the child never developed typically? Would the percentages differ if regression was involved?

The study didn’t address regression specifically. The researchers did look at overall level of function in the older child and found that it did not change the risk of autism for the younger sibling.
Comment From JoHanna

Is there any reason for the boys over girls with autism that you are aware of?

Johanna, this is a great question. There are many theories on why more boys are diagnosed with autism than are girls. One has to do with the location of risk genes on the sex chromosome. Some genes are located on the X chromosome and the extra X chromosome in girls may be protective. There are other theories that girls have different thinking and feeling styles than boys and are less likely to show symptoms.
Comment From Guest

Is the rate for susbsquent children having autism based on your other child that is diagnosed with autism or spectrum disorders??

Another great question. Thanks. This publication looked at the rate of autism spectrum disorders in younger brothers and sisters of children on the spectrum. The spectrum includes Aspergers.
FROM KATIE: What we need a study of vaccinated and unvaccinated siblings.
These investigators are looking at a number of things that happen during pregnancy and infancy that may influence the development of autism. To learn more about this study, follow this link to the EARLY STUDY.
Comment From Cathy

Just wanted to share that my 3-year old son participated in a Baby Sibs Study (at Yale) and it was a very good experience. I encourage other autism parents to enroll in these types of studies. They are extremely important to us all.

Cathy, thank you for your participation and your vote of enthusiasm about participating in a BabySibs study. If you all want to learn more–and possibly participate–in a BabySib reseach study, here is a list of sites and contacts …
We have time for a couple more questions. Forgive us that we were not able to get to all of your great questions and feedback.
Here is a link to the EARLI Study mentioned earlier.
Comment From Guest

In the study was there any correlation between the rate of ASD with length between births, birth weight, or length of gestation?

This study did not look at those factors. However, these have been identified as risk factors in other studies. The BabySibs research group is planning additional studies to explore the connections further.
Comment From Guest

If there is a family history of ASD behaviors, not necessarily diagnosed, how can we determine the risks or likelihood that future children will develop ASD? Are there preventative steps these families can take? Genetic Testing? Environmental changes?

I want to emphasize that this study did not exclude the role of nongenetic factors. However, we know that family history plays a very strong role in the development of autism. As previously mentioned, it is likely that genetics and outside influences work together, rather than separately. Further studies are in the works.
Thank you everyone for participating. Thanks so much for staying on for the full hour. Please continue to post your comments to our science blog at We look forward to the next chat!

Increased Risk of Autism in Siblings: Live Facebook Chat with Alycia Halladay, Ph.D.

August 15, 2011 29 comments

Autism Speaks’ Alycia Halladay, Ph.D., will be live online this afternoon (4 pm EDT, 1 pm PDT) to answer your questions on the just released study showing a high risk of autism among the younger siblings of children on the spectrum. Dr. Halladay organized and continues to help lead the High-Risk Baby Siblings Research Consortium that conducted the research and which continues to study the factors that predispose some families to autism recurrence. Please join us and bring your questions. Meanwhile, please see our news item and a special commentary from Autism Speaks’ Chief Science Officer Geri Dawson, Ph.D.

To join the chat, visit our Facebook tab.

To read the entire transcript from this chat, please visit here.

New findings on risk of autism in siblings – What do they mean for parents?

August 15, 2011 56 comments

A message from Autism Speaks Chief Science Officer Geri Dawson, PhD

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.

* The American Academy of Pediatrics has long recommended that all children be screened for autism at their 18 month well baby checkups, using the M-CHAT toddler screener, 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.

Vodpod videos no longer available.

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.

Time to Intervene?

November 3, 2010 4 comments

A New York Times’ article on autism highlighted the challenges of obtaining an early diagnosis and treatment for parents who are facing a second child who is at risk for ASD.  The story follows a family who has a diagnosed 5 year old son and a 7 month old baby boy who is showing signs of departing from a normal developmental trajectory, especially his interactions with other people.

The story is an excellent portrayal of the challenges and successes of a family living with autism and features two scientists engaged in the Autism Speaks’ High Risk Baby Siblings Research Consortium, Sally Rogers, Ph.D. and Sally Ozonoff, Ph.D.  The ability to distinguish autism from variations in development that lead to an otherwise normal outcome is limited at the early ages, but research is finding new ways to identify the earliest signs of autism risk.  Since the best bet for a good outcome is early, intensive behavioral intervention, identifying these early signs are extremely valuable.

The story highlights the Early Start Denver Model, an intervention approach developed by Rogers and Geraldine Dawson, Autism Speaks’ Chief Science Officer.  This intervention method, which was evaluated in a controlled trial, can be used with children at risk for ASD as young as 12 months of age.

While early intervention methods for toddlers with ASD are becoming increasingly available, there are still many families that have difficulty accessing early intervention services.  Autism Speaks is working to disseminate research that has been established as best practices while simultaneously pressing for more research in needed areas.  Our partnership with the Early Autism Risk Longitudinal Investigation (EARLI) has helped to broaden the participation and scope of this important study of early risk factors.  In terms of intervention, Autism Speaks’ support of the Toddler Treatment Network is focused on both the dissemination and further research needs in young children identified with autism.  At the same time, our continued advocacy for ending insurance discrimination for behavioral health services for children with autism ( ) is essential to our goal of providing every child with autism the services they need and deserve.

By strategically investing our scientific resources in areas of need and advocating for families, Autism Speaks seeks to improve the outcomes for those struggling with ASD today and to lessen the struggles for those who will be diagnosed tomorrow.


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