Right now, over 5 million people in the United States are autistic, and many of those people experience challenges like anxiety, epilepsy, sleep disturbances, or cognitive disorders. Even though more people are receiving diagnoses, we don’t know enough about how Autism Spectrum Disorder (ASD) impacts the brain and body to help improve the quality of life or provide better care options for autistic people.
Advancing Autism Research Beyond The Now
That’s because, to research autism, we must study postmortem brain tissue. We cannot use brain tissue from living donors, and brain donation is not included in standard organ donation registration. Without this critical resource, it is impossible to complete this necessary research.
At Autism BrainNet, we envision a future where we understand autism better and can provide more evidence-based information and care options for autistic people. We are committed to helping scientists advance autism research through the gift of postmortem brain donation.
Help us get beyond the now: learn more about how postmortem brain donation can make autism research possible.
“I decided to donate to Autism BrainNet because my husband and I wanted to help others that were in the same situation as we were in as a family. We were hoping with his tissue donation that this would help research for autism and help others discover ways to help individuals with autism, maybe different therapies, or different medical advances. Anything that could help and honor Declan at the same time.”
– Ryan, Mom of Declan
The Now
Why We Need To Advance Our Knowledge
Autism Spectrum Disorder (ASD) presents in many ways, and autistic people have varying needs and experiences. Some need no daily support, while others have substantially higher support needs. Some experience sleep disturbance or anxiety, while others may have co-occurring health conditions, like epilepsy. Researchers need more information to help improve these conditions or overall quality of life.
While we can study MRIs and other imaging in living autistic people, we can’t see what is happening on a molecular or cellular level without postmortem brain tissue. Autism BrainNet is a trusted program that enables research by coordinating and accepting brain donations, processing and storing brain tissue in our state-of-the-art facilities, conducting genotyping, and distributing brain tissue samples to qualified researchers worldwide.
At Autism BrainNet, we work with researchers whose studies are focused on understanding autism and related neurodevelopmental disorders.
We make decisions about brain tissue distribution with the advice of an independent Scientific Review Committee. The committee evaluates each researcher’s application based on its scientific quality, relevance, adherence to Autism BrainNet’s mission, and potential for significantly advancing science to improve the lives of people with ASD.
By empowering the medical and scientific communities with the necessary tools and brain tissue samples, we can work towards a future where, through advancements in research, autistic people and their families may have new opportunities to improve their quality of life.
Autism BrainNet in the News
Walk & Roll Live
Unlocking Autism Insights Through Brain Donation: A conversation with Autism BrainNet
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Yahoo! Finance
Demand is Increasing Worldwide for Autism BrainNet Postmortem Brain Tissue Resources
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Autism Spectrum News
Autism BrainNet: Promoting Understanding of Autism Through Brain Donation
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Empowered Patient Radio
Seeking Brain Donations to Advance Research and Understanding of Autism with Dorothy Frisch and Dr. David Amaral
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Beyond The Now
Meet Autism Researchers
Since its founding in 1994, the Simons Foundation has supported and championed research efforts to help understand the world around us. As part of the Simons Foundation, Autism BrainNet accepts postmortem brain donations and provides scientists with brain tissue so they can conduct cutting-edge brain research in autism and related neurodevelopmental disorders.
Hear from some of the scientists working with the Autism BrainNet resources about why their work is so important to them, what they’re working on now, what they are learning, and what they hope brain research can do for the autism community one day.
Listen to Our Donor Families
Beyond The Now
Discover Autism BrainNet
You’ve met some of our respected research colleagues and donor families. Now, meet some of Autism BrainNet’s leadership and clinical team to hear why brain donation is so impactful for the future of ASD research and how this work has impacted them.
Learn what furthering advancements in autism research means to them.
“Autism BrainNet was established because there has historically not been enough donated brain tissue from deceased individuals who were autistic. Thus, research into the genetic or structural changes in the autistic brain was limited by the available brain tissue. This situation is now changing due, in part, to the generosity and selfless contributions of autistic individuals and their families.”
– David G. Amaral, Ph.D.
A Brighter Future
What Beyond The Now Holds For Us
We believe that studying postmortem brain tissue can help scientists advance our knowledge of autism in ways that other research cannot.
Neurological conditions like Alzheimer’s Disease have been studied for more than 100 years (Alzheimer, 1907)1. Postmortem research for autism has been much slower. Neurological symptoms in autism were not discussed until the late 1960s. (Rimland, 1964)2, and the role of genetics in autism was first demonstrated in a landmark twin study in 1977 (Folstein and Rutter 1977)3. Until the 1990s, a lack of autistic brain tissue to study made progress very difficult.
In recent years, more tissue availability has allowed researchers to study autistic brains in-depth. The American Journal of Human Genetics just reported a study that described factors that can significantly increase the risk of autism. This study also uncovered information about how these factors affect different types of cells in the brain differently. (Dias et al. 2024)4
The authors say these findings are only possible because of postmortem brain donations. As postmortem brain tissue becomes available to researchers, the opportunity for studies like this will increase, undoubtedly leading to a better understanding of the biology of autism. The more we understand, the more we can hope for advancement in autism research, which may improve the quality of lives of autistic people.
Autism BrainNet is for the living. New discoveries give us hope and help us focus on our mission to empower crucial research with postmortem brain tissue research. Let’s advance our understanding of autism… beyond the now!
1. Alzheimer’, A. (1907), ‘Uber eine eigenartige Erkrankung der Hirnrinde.’, Zeits Psychiat PsychischYGerichtlich Med., 64, 146-48.
2. Rimland, B. (1964). Infantile autism: The syndrome and its implications for a neural theory of behavior. Appleton-Century-Crofts.
3. Folstein S, Rutter M. Infantile autism: a genetic study of 21 twin pairs. J Child Psychol Psychiatry. 1977;18(4):297-321. doi:10.1111/j.1469-7610.1977.tb00443.x
4. Dias, C., et al. (2024), ‘Cell-type-specific effects of autism-associated 15q duplication syndrome in the human
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Follow Our Work For A Brighter Future… Beyond The Now
We can only do this work because of the selfless contributions of families of autistic people who have chosen to make postmortem brain donations. Learn more about how brain donations can advance innovative research in autism and related neurodevelopmental disorders.