In addition to supporting high quality science to support early career investigators launch into autism research, ASF is involved in a number of collaborative partnerships that include scientists, families, clinicians and other researchers. By working together in a collaborative way, ASF aims to reduce duplication of efforts and make sure scientific findings gets into the hands of families as soon as possible.
This project, launched in 2017, examined possible reasons for the difference in the diagnosis rate in males vs. females. One possible reason is the presence of a genetic, or other effect, that “protects” some females from receiving an autism diagnosis. In early 2020, this research examined the genetics of over 11,000 people with ASD, and showed that females show a higher genetic load compared to males, which confirms that at least some of the reason of a difference in diagnosis is this protective effect. The Sisters Project looks specifically at the undiagnosed sisters of those who are diagnosed with autism, who have a higher genetic burden but do not have a diagnosis. This project has also resulted in studies examining specific risk factors for a genetic cause of ASD, provided guidance in early signs in females, and explored the use of tools which can be used remotely to assess for cognitive function.
The Baby Siblings Research Consortium (BSRC) is a multidisciplinary, collaborative community of researchers and clinicians committed to understanding the developmental origins and earliest signs of autism spectrum disorder (ASD) by studying infants at familial risk for ASD. Over the last decade, through rigorous studies conducted by investigators across multiple sites, the BSRC has identified both behavioral and biological markers of risk and disrupted development prior to the age of diagnosis, sparking studies of early intervention in infancy. The BSRC shares this knowledge with investigators, parents, and clinicians who provide care to communities and families, and shares research strategies with all those investigating high risk populations. You can read more here:
The mission of AGENDA is to improve outcomes for individuals with all forms of autism by fostering a genetics-first approach to autism and neurodevelopmental disorders research, and by strengthening collaborations among organizations representing genetically-defined disorders associated with neurodevelopmental disorders and autism. We do this through collaborative studies with over 20 patient advocacy groups, scientists and industry, communication to stakeholders, improving methods in resources like registries, and learning opportunities such as meetings around gastrointestinal issues.
The goal of this project is to establish a future collaborative network that will help in the 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 has begun at two sites where adult siblings have participated in previous research tracking autism families into adulthood: Emory University (under the direction of Dr. Mikle South) and University of California, Los Angeles (under the direction of Dr. Catherine Lord). This first phase includes talking to families about their research priorities, interests and experiences so future projects will bring in the family perspective. A recent ASF-funded study showed an increased rate of autism in children of non-diagnosed siblings, therefore it is clear that future research examining the 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.
Created during the COVID-19 pandemic, Sam’s Sibs Stick Together aims to offer extra support for autism siblings, present findings of research that focus on siblings, and discuss resources available for siblings of all ages.
Sibling Samantha Els serves as the moderator and ambassador of Sam’s Sibs Stick Together. Through her own experiences as an autism sibling, she helps shine a light on the importance of sibling research and support. She is joined by a panel of siblings who share their own experiences and perspectives on scientific research.
The Science Learning Series was created in 2021 to provide the opportunity for scientists to connect with the community and share their most recent discoveries and have a rich discussion on how their research affects the lives of people on the spectrum. Each webinar in the series is a 30 minute set of presentations with 30 minutes left for questions and answers, and the recordings of past webinars can be found at the link below. If you want to be alerted about upcoming series, please register for our newsletter.
ASF continues to work closely with the Autism BrainNet to encourage families to donate postmortem brain tissue for research. Brain tissue is now available to researchers worldwide and has helped identify new therapeutic targets and understand how brain connections are different in people with autism.
CANDID is a multidisciplinary collaboration of researchers, medical professionals, caregivers and patient advocacy groups — including ASF — who recognize the growing needs of families struggling to understand and manage gastrointestinal issues in their loved ones. CANDID first came together in 2021 with the ultimate goal of improving GI care for people with neurodevelopmental disorders.