Your brain could help solve autism and most people don’t know it
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Your brain could help solve autism and most people don’t know it
People support autism research but few know brain donation makes it possible.
Date:
April 8, 2026
Source:
Autism BrainNet
Summary:
A new survey reveals a striking disconnect in how Americans think about autism research. While nearly everyone agrees that studying the autistic brain is essential, most people are unaware that brain donation after death is a key part of making that research possible. Unlike organ donation, brain donation is a separate process, and widespread confusion remains about how it works, when it must occur, and who can participate.
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FULL STORY
Americans strongly back autism research, but most don’t realize brain donation is essential to advancing it. Credit: Shutterstock
Autism BrainNet has released new survey results that reveal a major gap between public support for autism research and awareness of how that research is carried out. While most Americans recognize the importance of studying the autistic brain, far fewer understand the role that brain donation after death plays in advancing scientific discoveries.
The survey found that 92 percent of respondents believe analyzing the autistic brain is extremely or very important. However, 70 percent said they had never heard of brain donation. This disconnect suggests that many people value progress in autism research without realizing what makes that progress possible.
Brain Donation vs Organ Donation Awareness
The findings also highlight a clear difference between familiarity with organ donation and brain donation. More than 80 percent of respondents are familiar with organ donation, and over half are registered organ donors. In contrast, only 15 percent know that brain donation is not included when signing up as an organ donor. It requires a separate process.
"For researchers who study autism and related neurodevelopmental conditions, postmortem brain tissue is a critical scientific resource that cannot be replicated by artificial intelligence, imaging technologies, or even animal experiments," explained David G. Amaral, Ph.D., Scientific Director of Autism BrainNet and UC Davis Distinguished Professor. "At Autism BrainNet, our goals are to facilitate the highest quality autism research, provide accurate information about brain donation to individuals and families, and increase comfort with planning for donation before a time of bereavement."
Widespread Confusion About Brain Donation Process
The survey, conducted Feb 26-Mar. 2, 2026 with 1,007 respondents, shows that many people are unclear about how brain donation works. Fewer than half of participants knew that donation must take place within hours after death, not days or weeks later. A small number even believed that donation could occur while a person is still alive.
There are also misconceptions about who qualifies to donate. Nearly one-third of respondents incorrectly thought that certain conditions, including autism or epilepsy, would prevent someone from donating. In reality, these individuals are especially valuable to researchers, who rely on a wide range of brain samples to better understand neurodevelopmental conditions.
A Family Perspective on Brain Donation
"My younger, autistic brother Ed led a rich and happy life, surrounded by friends and family who adored him and appreciated his many interests and his big, loving character," said Kathy Stein, who donated her brother's brain to Autism BrainNet. "When he passed, I donated his brain because it is a positive way to acknowledge what a wonderful person he was and to extend his legacy. Imagine how much we can learn about the biological causes of autism and related neurodegenerative disorders through his contribution."
Public Education Efforts and Upcoming Reddit AMA
To improve awareness, Autism BrainNet will host an "Ask Me Anything" session on Reddit during Autism Acceptance Month. The event is scheduled for April 29 from 12-2pm ET. Dr. David Amaral will be joined by Dr. Alycia Halladay, Chief Science Officer of the Autism Science Foundation, to answer questions about brain donation, including how to become a donor and what the process involves.
Dr. Amaral added, "Brain donation is for research purposes only, not for transplantation. While brain donation is not included in organ donor registries, brain donors can also be organ and tissue donors, and brain donation is not limited by most medical conditions. In fact, we most need postmortem brains from autistic people and those with related neurodevelopmental conditions to advance research. That's why we encourage autistic adults, families, and care partners to learn more about Autism BrainNet."
Who Can Donate and What Families Should Know
Autism BrainNet accepts donations from people with a diagnosis of autism, even when other diagnoses are present, from people with a genetic diagnosis assoc