As part of a personal quest to understand the way his brain with autism functions, a man with the disorder decides to donate it to science.
by Jon Hamilton –
Research on autism is being hobbled by a shortage of brain tissue.
The brain tissue comes from people with autism who have died, and it has allowed researchers to make key discoveries about how the disorder affects brain development.
But there’s not nearly enough tissue because most potential donors aren’t identified, and their family members are never approached about the possibility of donation. The shortage has been especially bad since last summer, when a freezer at a Harvard brain bank failed, allowing dozens of autistic brains to thaw.
This is the story of three people who are grappling with the shortage: one is a man who has autism, one is a scientist who studies the disorder, and one runs a tissue bank.
The man with autism is Jonathan Mitchell. He’s in his late 50s and describes his brain as “damaged.”
Here’s how Mitchell describes life with an autistic brain: “It’s prevented me from making a living or ever having a girlfriend. It’s given me bad fine motor coordination problems where I can hardly write. I have an impaired ability to relate to people. I can’t concentrate or get things done.” He adds that part of his day is spent engaging in a self-stimulatory behavior that involves shaking a pencil and some shoelaces at a certain frequency while he rocks back and forth.
Mitchell lives in Los Angeles. He has a degree in psychology and used to work, at times doing things like data entry. “But then I got fired from so many jobs, I ended up retiring and being supported by my parents,” he says. Mitchell says he was fired because employers thought he was too loud, made too many mistakes and smelled bad.
Like a lot of people with autism, Mitchell is unflinchingly honest. When I say he sounds angry, he says “Yes, I’m very angry and very embittered.” When I ask why he decided to talk to me, he responds that he’s “a little self-centered and superficial and a little bit of a publicity hound.”
What’s the worst part about having an autistic brain? “The celibacy,” he says. “The loneliness. The isolation.”
Mitchell has spent a lot of his life trying to understand his own brain. In college, he took classes in neuroscience because he wanted to know which parts of his brain weren’t working correctly. Later he volunteered for research studies that used MRI scans to look at the structures in his brain.
Mitchell eventually began to focus on research that examined brain tissue from people with autism. Scientists were finding some amazing things. But the research was going very slowly because there wasn’t much brain tissue available for research.
So a few years ago, Mitchell decided to do something. He signed up for a program that will donate his brain to science when he dies.
Read more at Shortage Of Brain Tissue Hinders Autism Research.