Efforts to generate a resource of postmortem brain tissue for research are in their infancy. Autism BrainNet, a program of the Simons Foundation, is trying to jump-start those efforts. Currently, there are fewer than 200 postmortem autistic brains in the Autism BrainNet program available to researchers worldwide who are looking into the underlying biological causes of autism and related neurodevelopmental disorders. Postmortem brain tissue accelerates research efforts and advances our understanding of autism because it allows studying the human brain at the cellular and molecular levels. Other techniques, like magnetic resonance imaging (MRI), cannot substitute for what can be learned from studying human tissues.

Autism spectrum disorder (ASD or autism) and related neurodevelopmental disorders are neurological conditions. Beyond the core diagnostic features of autism (such as deficits in social communication and/or restrictive or repetitive behaviors), individuals often have epilepsy, anxiety, intellectual disability, and sleep disorders, which are also associated with alterations of brain function. For that reason, postmortem brain tissue is incredibly valuable because it provides a direct line to better understanding the biological causes of autism and its myriad co-occurring conditions. This knowledge will ultimately lead to reducing the challenges of autism and improving the quality of life for autistic individuals and their families.

Physicians and other health care providers are in a unique position to educate autistic patients, their families, and caregivers about the opportunity to consider postmortem brain donation with Autism BrainNet. The gift of one brain donation can support hundreds of research studies around the world and remain viable for decades because of the protocols in place at the organization’s three collection sites in the United States: Massachusetts General Hospital, Boston, MA; University of California Davis MIND Institute, Sacramento, CA; and University of Texas Southwestern Medical Center, Dallas, TX. An additional collection site has been established at the Douglas-Bell Canada Brain Bank at McGill University in Montreal. These state-of-the-art facilities allow donations to be made from anywhere in the United States and Canada, and each donation is carefully processed and preserved for future distribution to approved researchers worldwide.

How to talk about brain donation

To educate autistic individuals and their families about brain donation, here is what I typically convey to them:

1. Brain donation is not the same as organ donation because postmortem brain tissue is for research purposes only and not for transplantation. Hence, you cannot signal your willingness to donate via most organ registries, such as those found at the Department of Motor Vehicles. Rather, it’s a process that needs to be considered in advance, and to donate brain tissue, the consent of a next of kin is necessary. Importantly, postmortem brain donation does not prohibit organ donation, which is strongly encouraged as it can save lives.

2. The brain bank accepts postmortem brain donations from people with a diagnosis of autism, even when other diagnoses are present; from people with a genetic diagnosis associated with autism, with or without a diagnosis of autism; and from neurotypical people. We need a large number of donated brains because autism and related disorders present with such heterogeneity.

3. Importantly, a brain remains viable for research only if it is processed close to the time of death, within 24–48 hours. For that reason, the program maintains a 24/7 telephone helpline (1-877-333-0999) to answer families’ questions and/or arrange for a brain donation. Once consent is secured for a brain donation, the Autism BrainNet clinical team handles all the coordination to collect, process, store, and eventually distribute tissue samples or associated genetic information to researchers.

4. Even if autistic individuals or families inquire about brain donation, there is no obligation. There is also no cost to families at any time, and donation does not impact the opportunity to celebrate a loved one’s life with a funeral.

Over the years, we’ve heard repeatedly from families that knowing their loved one’s brain will contribute to the future understanding of autism provides significant comfort during a time of grieving. Families tell us that they hope all we learn in research will benefit future autistic individuals.

Autism BrainNet is not the only brain bank that collects postmortem tissue to advance scientific research. Boston University’s Chronic Traumatic Encephalopathy (CTE) Center has vastly expanded understanding of the impact of repetitive brain trauma and onset of chronic traumatic encephalopathy in athletes, military personnel, first responders, victims of physical violence, and others affected by head trauma. In addition, the NIH-funded NeuroBioBank has served as a national repository since 2013 for investigators who use postmortem brain tissue and related biospecimens to advance biomedical and public health research. Donors to this brain bank span a variety of neurological, psychiatric, and neurodevelopmental diseases and disorders.

Neurological conditions are complex, which is why there is a need to educate and encourage brain donation. It’s an opportunity to extend the legacy of individuals and increase scientific knowledge about brain disorders.

David G. Amaral is a professor of psychiatry and behavioral sciences.