GREEN VALLEY, Ariz. (KGUN) — Since 2014, Autism BrainNet has served as the largest repository for the brains of autistic individuals, driving crucial research into understanding autism. For one family in Green Valley, this groundbreaking initiative became a meaningful way to honor their loved one’s life and legacy.
Ed Stein, a winter resident of Green Valley for over 30 years, was a man with autism who embraced his unique perspective on life. His sister, Kathleen Stein, described him as a man of boundless energy and humor.
“Ed was full of energy and fun,” Kathleen said. “He didn’t let autism get in the way of enjoying his life fully.”
Kathleen once asked her brother what autism was like, to which he replied that it was a different way of seeing the world.
“That is an incredibly astute layperson’s definition of the condition,” she said. “It’s quite remarkably insightful."
Born in 1956, Ed grew up during a time when little was known about autism. Kathleen recalled their family’s journey.
“When Eddie was little, it was clear that he was slower to develop than other children, but back then, nobody knew about autism,” she said. “In fact, he wasn’t diagnosed until his 30s.”
Despite the late diagnosis, Ed’s passions flourished. Whether it was riding steam trains or collecting postcards, he fully immersed himself in the things he loved, often referring to himself as a “smart cookie.” Kathleen said Ed’s autism was not a hindrance but rather an integral part of his identity and happiness.
Ed passed away in the summer of 2024 due to multiple-system atrophy, a debilitating disease affecting the brain and nervous system.
In his final years, Kathleen began to think about how Ed’s life could continue to impact others. That’s when she discovered Autism BrainNet, an organization dedicated to advancing autism research through brain donations.
“Eddie had a really beautiful mind,” Kathleen said. “He had a prodigious memory, a great sense of humor and lots of passions. Donating his brain for research just seemed natural.”
David G. Amaral, Ph.D., director of Autism BrainNet, emphasized the significance of such donations.
“This is dedicated to ultimately having better targets for treatment of some disabilities that affect autistic individuals,” Amaral said.
These disabilities include sleep disorders, anxiety and epilepsy, which impacts about 20 to 30 percent of those with autism, according to Dr. Amaral.
Dr. Amaral emphasized that the program doesn’t look to prevent autism as a condition.
“We’re not trying to cure autism, but we are trying to improve quality of life,” he said.
Autism BrainNet looks for both brain donations with or without autism to further its research, as it requires a comparison between the two.
“Our goal is to try and understand the differences between autistic and non-autistic brains that might explain not only the core symptoms of autism but some of the medical issues that are common in autism,” Amaral said.
Since its founding, the organization has received about 400 donations of brain tissue. These tissue samples are available to researchers worldwide.
Having brain tissues allows for a more in-depth view of the brain’s workings than other common research methods, such as MRIs, which Dr. Amaral says is like “looking down at the Earth from a plane 30,000 feet above.”
Among its findings thus far, researchers have found that autistic individuals have fewer inhibitory neurons, used to regulate self-control and other functions related to inhibiting actions. Dr. Amaral says this leads to an imbalance in excitatory neurons, which could be the cause of repetitive actions among those with autism.
Other findings include a possible connection between autism and Alzheimer’s Disease, which are still in the early stages of research. Dr. Amaral says that as more brain tissue is donated, researchers will better be able to identify the link in the near future.
Those interested in donating their brains to Autism BrainNet can call its hotline at 877-333-0999 or visit the organization’s website. Brains are not covered under a standard organ donation registration.
All brain donation services are completely covered by Autism BrainNet, including shipping, processing and preservation.
Kathleen is proud to know Ed’s brain will contribute to these groundbreaking studies, including research on multiple-system atrophy, the disease that claimed his life.
“I think Eddie would be very pleased with the idea that the brain he so enjoyed in his life is now carrying on in a meaningful way,” she said.
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Joel Foster is a multimedia journalist at KGUN 9 who previously worked as an English teacher in both Boston and the Tucson area. Joel has experience working with web, print and video in the tech, finance, nonprofit and the public sectors. In his off-time, you might catch Joel taking part in Tucson's local comedy scene. Share your story ideas with Joel at joel.foster@kgun9.com, or by connecting on Facebook, Instagram or X.
