• Posted April 3, 2026

Most Americans Don't Realize Brain Donation Is Needed to Study Autism

Americans are overwhelmingly supportive of autism research, but a new survey has uncovered a lack of  awareness that could be slowing scientific progress. 

Very few realize that the most critical tool for researchers — the human brain — is in short supply.

While nearly everyone agrees that studying the brain is vital, 70% of folks surveyed by Autism BrainNet had never heard of brain donation.

The survey, conducted Feb. 26 to March 2, included 1,007 respondents. 

Results — released Wednesday to mark the start of Autism Acceptance Month — also found that a scant 15% of respondents were aware that being a registered organ donor does not automatically include their brain.

Unlike other organs that might be used for transplants to save lives immediately, brain donation is strictly for research.

While technology is improving, researchers emphasize that there is no substitute for the real thing when it comes to solving the mysteries of neurodevelopment.

“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,” David Amaral, scientific director of Autism BrainNet, explained in a news release.

Many people incorrectly believe that having a medical condition like epilepsy or autism itself would disqualify them from donating. 

In reality, researchers need a diverse range of brains — both from people with autism and those without — to understand biological differences.

For families who have participated in the program, donation is seen as a way to turn a loss into a lasting contribution to the world.

Kathy Stein, who donated her brother Ed’s brain after he died, viewed it as a tribute to his life.

“I donated his brain because it is a positive way to acknowledge what a wonderful person he was and to extend his legacy,” Stein said. “Imagine how much we can learn about the biological causes of autism and related neurodegenerative disorders through his contribution.”

The logistics of brain donation are time-sensitive. To be useful for science, the donation generally needs to occur within 48 hours of death. 

Brain donation centers handle all the costs and arrangements, ensuring that the process does not interfere with funeral plans or open-casket viewings.

Because brain donations are a separate registry from standard organ donation, families interested in donating are encouraged to discuss their wishes early. 

Brain donations can be made through several organizations. The National Institute of Health has partnered with the Brain Donor Project to help connect potential donors.

Autism BrainNet is hosting an "Ask Me Anything" session on Reddit on April 29 from 12 to 2 p.m. ET to answer questions.

More information

Learn more at AutismBrainNet.org or by calling its toll free 24/7 hotline at 877-333-0999.

SOURCE: Autism BrainNet, news release, April 2026