Autism Science Foundation Funds ‘Next Gen Sibs’ Research Project to Aid and Better Understand the Children of Typically Developing Siblings

NEW YORK — October 12, 2021 — The Autism Science Foundation (ASF), a nonprofit organization dedicated to supporting and funding innovative autism research, today announced the first funding recipients in its ‘Next Gen Sibs’ research project. The goal of this project is to establish a future collaborative network that will help in identification, evaluation and possible diagnosis and intervention for the Next Generation: the children of typically developing siblings of individuals with autism spectrum disorder (ASD). The study will begin at two sites where adult siblings have participated in previous research tracking autism families into adulthood: Emory University (under the direction of Dr. Michael Morrier) and University of California, Los Angeles (under the direction of Dr. Catherine Lord).

This project is based on data from the Baby Siblings Research Consortium (BSRC), which has shown the rate of autism in typically developing non-autistic siblings of those with a diagnosis to be 15x that of those with no family history. Together with the results of a recent ASF-funded study – which showed an increased rate of autism in the children of siblings of autistic individuals – it is clear that future research examining heritability of ASD should expand into the next generation. This next generation needs early recognition, diagnosis and services that can help them live the most fulfilling lives possible, and in order to do that we need a better understanding of their needs. 

“ASF is incredibly proud to be funding this Next Gen Sibs project, which will play an important role in further understanding the genetic role of autism and how we can more quickly diagnose and treat young children who have a history of autism in their families,” said ASF Chief Science Officer Dr. Alycia Halladay. “Siblings who participated in research studies over 20 years ago are now adults and have expressed interest in better understanding why there is a higher rate of diagnoses in their own children, who are the nieces and nephews of autistic adults. The Next Gen Sibs project aims to find the answers these families seek.”

“The Next Gen Sibs project is an example of how ASF strives to address the most urgent questions in the autism community,” said ASF Co-Founder and President Alison Singer. “This new project is a direct result of many conversations we’ve had over the years with autism families and researchers who want to know more about the genetic factors associated with autism, and specifically how they might impact the children of typically developing non-autistic siblings. We are so grateful to our generous donors, who make this important new research project possible.”


About the Autism Science Foundation

The Autism Science Foundation (ASF) is a 501(c) (3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. To learn more about the Autism Science Foundation, or to make a donation, visit   

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Kathy Ehrich Dowd

Forefront Communications for Autism Science Foundation


This week a 5 country collaboration including the largest number of people EVER revealed 80% of the causes of autism are heritable. This is incredibly important to understand autism and move forward with research that matters to families.  What it did not do was calculate the role of gene x environment interactions which seems to be the forgotten stepchild of autism research.  This week’s #ASFpodcast explains why it is important to understand the heritability while at the same time study the combined effects of genetic and environmental factors. Listen to the podcast here.

Don’t be fooled, not all the studies on this week’s podcast focus on the DSM5.  But the first one, a review of a meta analysis and review of the dozens of publications that have emerged in the past 5 years around the DSM5 leads us off.  There are some people that weren’t captured by either DSM5 or Social Communication Disorder that need a diagnosis, and that should be the focus of future research.  A new topic of diagnosis is also explored by a large collaboration is addressed:  diagnosis in cousins.  They do show a higher probability of an autism diagnosis, but not as high as first degree siblings.  Finally, a new tool called JAKE in monitoring  treatment effectiveness is presented.  This could be used not just in the clinic but at home.  It includes monitoring of biological and behavioral features, and might be the next big thing in outcomes for treatment studies. Listen to the podcast here.

This podcast is dedicated to siblings of people with autism who are typically developing. They play an important and beneficial role in development of socialization of those with ASD. But sadly, they also have issues of their own, such as a high rate of issues like anxiety and depression. Those siblings may be genetic carries of a specific mutation and not have an autism diagnosis, but have increased risk for schizophrenia and cognitive disability. Finally, just because they are considered “typically developing” doesn’t mean they don’t have challenges with adaptive behavior. However, they have a very special relationship with their brothers and sisters, and the world needs these strong advocates for the community.

ASF is proud to announce continued support for the Baby Siblings Research Consortium (BSRC), a network of over 33 research sites around the world studying the younger siblings of people with autism. The Baby Sibs database now tracks over 5,000 younger siblings, with and without autism. The database has been used to develop more sophisticated screening and diagnostic approaches, to understand early biological features of ASD even before symptoms develop, and to inform clinicians of early treatment targets. The additional funding will allow researchers to continue submitting information to expand data points so that a deeper understanding of development across the lifespan can be made. ASF support will also allow scientists to collaborate on key issues like early biological testing and searching for biomarkers of ASD.

By Seowon Song

In my opinion, I am a quite ordinary university student in South Korea. However, there is a feature that has made my life unusual: my older brother. He is two years older than me, and has autism. This may sound strange, but at least in South Korea, living as a sibling of an autistic person is considerably different from others.

Seowon Song

Seowon Song

A summer day of July 2009, I had a chance to participate a summer camp held by Autism Society Korea (ASK). In the camp, there were many families of children with special needs, and the programs were divided into three parts; for the children, for the parents, and for the siblings. That was the first time for me to meet other children who had had similar experience being siblings without disabilities. Some of them seemed to be unfamiliar with talking about their family members, especially their brothers and sisters. I was the oldest among them, so I shared my story and tried to make them feel free to talk about their experience. When I listened to them and expressed my empathy, a little boy hesitated for a moment and asked me a question.

“How can you understand me that well?”

That was the first moment that I realized the necessity of supporting groups for siblings where they could share their experience and empathize with one another. Also, I made my mind to make a sibling supporting group in South Korea someday.

In the beginning of January 2016, I met four other siblings of my age. On the first day we met, we even lost track of time talking about our lives and realized that we had quite a few things in common. Even though our siblings with special needs had different symptoms and aspects in detail, we had similar experience, concerns, and thoughts. When we were children, we had felt left out in our families or from our parents, and even felt ignored by them. There were a lot of things that we couldn’t understand about our brothers and sisters, but there was almost no one whom we could ask. Some of us used to feel resentment toward our siblings themselves, the disabilities of our siblings, and parents, which led us to feel guilty about the anger. Some people, including me, had a tendency to strongly desire to be acknowledged and used to tried hard to exceed expectations from others to be loved. Talking about our lives, we decided to form the first sibling supporting group in South Korea, and named it as “Nanun,” which means “It’s about me.”

From the beginning, we have had dozens of meetings with other siblings. In the meetings, they felt free to talk about their brothers and sisters, parents, and especially themselves. Having gathered diverse episodes from those meetings, finally, we published a book containing our stories in March 2018. Not only did we get a success in the publication, but we also achieve a lot of things in “Nanun.” Firstly, there is a lack of attention to people with disabilities in South Korea, so it’s hard to expect concerns for their family members, especially the siblings. We made it possible for people to realize the existence of siblings of people with special needs. Additionally, for the first time in our lives, we had a chance to be more concerned with ourselves, not the brothers and sisters or parents. We tried to concentrate on ourselves, face and admit the various emotions. It helped us to relieve our anxiety or alienation as siblings without disabilities.

But the most important thing that we fulfilled was to recognize that we are not alone. In my case, I had felt alone and strange because I had thought that I might be the only one who had anger, fears, and guilt being a sister of an autistic person. I was afraid that there might be no one that understand me and empathize with me. However, forming the supporting group and meeting siblings, I finally realized that I was not the only one. Also, I am not the only one who does not feel alone anymore. Standing with many other siblings, we understand the power of being together and make a next step to be mature.

Podcast Logo_02202017This week the Infant Brain Imaging Study, or IBIS, published it’s second study on the emergence of changes in the brains of individuals with autism. While red flags for autism can be seen early, a diagnosis of autism is not typically made until after 24 months of age. Using a baby sibling research design, scientists showed increases in the size of certain areas of the brain between 6-12 months. This opens up opportunities for even earlier diagnosis of ASD in the future. Also, a group at Stanford shows the emergence and disappearance of co-morbid symptoms in autism, such as epilepsy, schizophrenia and ADHD, which are dependent on sex and age. Together, these studies show that autism begins very, very early, and symptoms and behavioral and biological features change over time. Click here to listen to this week’s podcast.