Medical examiners are also important because they have access to people who don’t have autism, and so aren’t reached by advocacy groups. “We need typical brains just as much as ones with autism,” says Schumann. Without receiving these age-matched “controls”, the researchers wouldn’t know which brain features are typical and which are characteristic of autism.
Zielke says he doesn’t judge parents if they decide not to donate a brain at a time of such crisis, but Schumann said she’s been amazed at how generous family members can be despite their grief. She said she initially thought the hardest part of her job would be asking families to donate. “If anything, they tell us thank you, which is just not what I expected.”
Christopher LePoer says he’s still excited by the idea that – even in death – Alexei will be able to make a contribution.
“I only had four years and it wasn’t close to enough, but I’m so grateful that I did have four years with him. He was an amazing little boy. Amazing,” LePoer says.
He says he keeps reliving the events leading up to his son’s death, wondering what he could or should have done something to prevent it. “I don’t go 5 minutes without thinking about him,” LePoer says. “It’s just: what if, what if…”
Knowing that Alexei’s brain is now helping someone else gives LePoer what little peace he can find.