When Ed Stein passed away in July after a long and happy life that was colored but not constrained by mild autism, his sister Kathy wanted to do something that would memorialize him.
“He was the kind of guy where he would walk into a room and it would seem full,” she said of her brother, who ran the ad-insertion machine in the Concord Monitor’s circulation department for two decades. “He was proud of having a job – it wasn’t a throw-away job, it was a real one.”
After much thought and planning, she said, she decided on an unusual memorial: She donated his brain for autism research.
“Eddie loved his brain. He said, ‘I’m a smart cookie!’ and he was always a very curious person,” she recalled. “The way he felt good about the power of his brain led me to say he would think this was a good idea.”
The donation was made to Autism BrainNet, a 10-year-old organization that collects the brains of people with many types and levels of autism, making them available to researchers who are trying to decipher what causes the condition.
“For neurological disorders like Alzheimer’s and Parkinson’s disease, we’ve gotten the greatest insight by studying the brains of people who had it during life. What are the alterations in the structure and genetics of the brain that led to his altered behavior?” said Dr. David Amaral, scientific director for Autism BrainNet. “But autism is relatively new in collecting post-mortem brains.”
Formed in 2014, Autism BrainNet is managed by the Simons Foundation. It has three collections of tissue, in California, Texas and at Massachusetts General in Boston, which are made available to researchers.
“We’re not trying to cure autism,” said Amaral. “But when you understand a disorder or disease, you can start doing something to improve the quality of life.”
He pointed to anxiety and sleep disorders, both of which affect a disproportionate percentage of people on the autism spectrum. “Treatments don’t work that well with people with autism. We don’t know why,” he said. “The only way we’re going to really understand what’s causing the problems in autistic experience is by studying the brain.”
Kathy Stein became aware of Autism BrainNet as part of her long role in helping her brother in his life and realized that panning was vital.
“The big difference from organ donations is … if you want to donate brain tissue, you really have to plan ahead. Eddie died in his sleep, but it was sudden – if we hadn’t planned it could have been an issue,” she said.
Advance planning is needed, Amaral said, because “death starts essentially a degrading process of the brain. Tissue starts changing but even the genes start degrading. In brain donation for research, we want to see what the brain looks as close to what it was like in the living person as possible.”
As a result within 48 hours of death, and hopefully within 24 hours, brains need to be prepared and frozen for future use. Because brain donation is less well established in medical facilities than donation of other organs, that’s not likely unless everything has been readied in advance.
Eddie Stein, who died at 67, lived with a family in the Concord area for 25 years, and his walks around the city made him known to people from the library to Main Street stores to police officers, who were fond enough that his passing was mentioned in the department’s morning roll call, Kathy said.
Autism is a neurological disorder that produces a host of different symptoms and occurs at many levels, hence the usage of the metaphor of a spectrum. At its most severe, patients can’t speak and are almost paralyzed by repetitive or restricted motion, but for people like Eddie it’s one of many factors in their life.
That enormous range of symptoms is one reason that autism research is so complicated, Amaral said, and may indicate that what we call autism is actually several different syndromes that have different causes and different treatments but present overlapping symptoms. The parallel, he said, is like cancer.
“I would bet in 20 years from now we’re not going to call it just one thing. Like cancer, it will be different types – breast cancer, prostate cancer, this cancer, that cancer,” he said.
For Kathy Stein, there is satisfaction in knowing that her brother’s brain will be helping find answers.
“The tissue can be used for years and years afterwards. It’s possible that research that’s done 20 or 30 years from now can use it,” she said. “Eddie would like that.”
For more information about making brain donation, call AutismBrain Net at 1-877-333-0999 or at https://www.autismbrainnet.org. The organization also collects brains of people under the age of 50 who are not on the autism spectrum, to be used as comparison.
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