Autism BrainNet today released new survey findings revealing a significant disconnect between Americans' strong support of autism research and their limited understanding of the role postmortem brain donation plays in advancing it. The survey found that 70 percent of respondents had never heard of brain donation, despite 92 percent agreeing that analysis of the autistic brain is extremely or very important to advance research.
The findings highlight a sharp contrast with organ donation as more than 80 percent of respondents are familiar with organ donation and more than half are registered organ donors. However, only 15 percent of respondents know that brain donation is not included when you sign up for organ donation. It is 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."
Survey highlights misunderstandings about brain donation
The survey, conducted Feb 26-Mar. 2, 2026 with 1,007 respondents, reveals widespread confusion about how brain donation works and who is eligible. For example, less than half of respondents know that postmortem brain donation needs to take place hours after death, not days or weeks after death, and not when a person is alive, as a small percentage indicated. Misunderstandings about eligibility are also common as nearly one‑third of respondents incorrectly believe certain medical or neurological conditions, specifically autism or epilepsy, disqualify someone from donating, despite their high value to researchers who need a heterogeneous selection of brains to study these conditions.
"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."
Autism BrainNet to host Ask Me Anything session on Reddit
During Autism Acceptance Month, Autism BrainNet will work to improve understanding of brain donation by hosting an "Ask Me Anything" session on Reddit on April 29 from 12-2pm ET. Available to answer questions about what brain donation is, how someone can become a donor, the process for brain donation, and more will be Dr. David Amaral, alongside Dr. Alycia Halladay, Chief Science Officer of the Autism Science Foundation.
To get a reminder about the AMA event, visit: https://www.autismbrainnet.org/newsletter/
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."
Autism BrainNet accepts donations from people with a diagnosis of autism, even when other diagnoses are present, from people with a genetic diagnosis associated with autism, whether or not they have a diagnosis of autism, and from nonautistic people. To preserve the scientific value of the brain tissue, a donation should be received within 48 hours after death, though donation may be possible later. There is no cost to families and all logistics are handled by Autism BrainNet. Brain donation does not impact any kind of funeral arrangements preferred by families.
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