Autism spectrum disorder (ASD or autism) is a very complex developmental condition which has common features but also many differences in each person. Since autism is a condition that primarily affects the brain, much of current autism research focuses on the differences between autistic and neurotypical brains. While tools like magnetic resonance imaging (MRI) have helped us better see into the brain, it is like looking at the earth from 30,000 feet above. To gain a deeper understanding of what’s happening to the molecules and cells of the brain, researchers need access to postmortem brain tissue, a rare and precious resource.
The value of postmortem brain tissue to study conditions at the anatomical, cellular and molecular level cannot be understated. At the turn of the 20th century, about 120 years ago, scientists could see clear differences in the brains of Alzheimer’s patients compared to typical brains. In autism, while there is no finding comparable to the Alzheimer’s plaques and tangles, studies of autistic brain tissue are opening new avenues in understanding the biological bases of autism.
Meeting the demand for postmortem brain tissue to support and advance research in autism and related neurodevelopmental disorders is challenging because right now there are only about 200 brains from autistic individuals available to scientists worldwide within the Autism BrainNet brain bank, the largest repository for the gift of brain donation for autism research. This may seem like a large number. But, because of the heterogeneity inherent in autism, a very large number of samples are needed. That’s why Autism BrainNet, a program of the Simons Foundation, is working to raise awareness of their program. The program is the bridge between the autism community and researchers at major research facilities around the globe. Autism BrainNet is dedicated to managing the collection, storage, and careful distribution of samples, so that researchers can use them to learn about the biological causes of autism and related disorders.
The stakes are high. Autism isn’t just about challenges with communication or repetitive behaviors—it often comes with other co-occurring conditions like epilepsy, anxiety, sleep disorders and intellectual disability. Having access to postmortem brain tissue allows researchers to dig deeper into these connections and, hopefully, contribute actionable measures that could improve the lives of autistic individuals and their families.
How Brain Donation Makes a Difference
The gift of one brain can support hundreds of research studies because of the cutting-edge facilities Autism BrainNet has in place. There are collection sites at Massachusetts General Hospital (Boston, MA), UC Davis MIND Institute (Sacramento, CA), UT Southwestern Medical Center (Dallas, TX), and the Douglas-Bell Canada Brain Bank (Montreal, Quebec). Thanks to the storage protocols, donated brains can be preserved for decades and distributed to approved researchers all over the world.
It’s about impact. With every study that uses this tissue, scientists can uncover new insights into how autism works at the cellular level. This knowledge could one day lead to targeted interventions, or treatments aimed at offering autistic people more choices about how to lessen their challenges.
Healthcare Providers Can Educate About Brain Donation
Talking about brain donation isn’t easy, especially during a health crisis, when emotions are already high. Healthcare providers are in a unique position to educate families about brain donations. They can explain how donations aren’t just helping researchers—they’re helping future generations of autistic individuals.
It’s also important to clarify that brain donation is a process separate from organ donation. While it’s common to sign up as an organ donor when getting or renewing your driver’s license, the brain is not included, since organ donation is specific to transplantation. Instead, families considering brain donation have to plan ahead and the next of kin must provide authorization for brain donation.
Still, both types of donations, for transplantation and research, can happen together and are strongly encouraged! Autism BrainNet makes the process of brain donation simple. The Autism BrainNet 24/7 helpline (1-877-333-0999) can be called both to ask questions about donations, or start the donation process. The team at Autism BrainNet handles every step of the process—from donation to transportation to preservation—so families don’t have to worry about logistics.
The FAQs of Brain Donation
When families think about brain donation, a lot of questions come up. Here’s how to address some of the biggest concerns commonly faced:
- It’s for Research Only: Brain donation doesn’t go toward transplantation like organ donation does. It’s strictly for advancing science.
- It’s Inclusive: The program accepts donations from people with autism, those with genetic conditions tied to autism, and neurotypical individuals. This diversity is critical because autism presents so differently in each person.
- Timing is Tight: For brain tissue to be useful, it has to be preserved within 24-48 hours of death. That’s why planning ahead is so important.
- No Cost to Families: Autism BrainNet covers all the costs, so families don’t have to worry about expenses related to brain donation.
- Funerals Can Proceed: Akin to organ donors, individuals who donate their brain can still have their lives celebrated during a funeral, as their family wishes, even open caskets. The skilled medical professionals who perform the brain donation ensure this is possible.
One thing donor families often report back to Autism BrainNet is how much comfort the process brings them. Knowing that their loved one’s brain is contributing to autism research can be a meaningful way to cope with grief. Families tell us that they hope all we learn in research will benefit future autistic individuals.
A Legacy That Lasts
Neurological conditions like autism are complicated. Why do some people have remarkable, artistic or intellectual savant talents whereas others have intellectual disability? Why do some autistic people have specific interests to talk about and others are nonverbal? The more we can study the brain, the closer we’ll get to understanding this disorder. Brain donation is one way families can leave a lasting legacy, helping scientists uncover the answers we’re all searching for.
If you’re curious about brain donation or want to learn more, visit AutismBrainNet.org or call 1-877-333-0999. Every donation makes a difference—for science, for families, and for the future.
Image source: ID 346919618 | Brain Donation ©
Panuwat Dangsungnoen | Dreamstime.com
David G. Amaral, Ph.D.
David G. Amaral, Ph.D., is Scientific Director of Autism BrainNet and UC Davis Distinguished Professor at the UC Davis MIND Institute and Department of Psychiatry and Behavioral Sciences.
