Today’s post is by Jeff Stimpson, author of the books Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism.
My wife Jill’s cousin Allen died yesterday. He died of a heart attack. He was 48, and he has a son with autism. “Had.” I guess I meant to write “had” there.
They lived in Chicago, and I saw Allen and his son Eric on New Year’s Eve. “Is it okay if we come?” Allen asked about the party at Jill’s sister’s. Allen (secret history of heart trouble, we’ve since found out) came in the door with Eric, who is 16 and for about two years has lived in a residential school. Alex got excited when he laid eyes on Eric, and tried to say hello with more energy that he had summoned to say hello to anyone all evening. Allen took Eric’s hand and steered him toward the computer in the back bedroom. Eric isn’t much for parties, and of course he isn’t much for most people. He was close to his dad. “Eric, calm down,” I remember Allen telling him in a coffee shop. “Eric, it’ll be okay.”
And I guess it usually was okay, though we didn’t see them much. I was hoping we’d see them more in the years ahead. Because, after all, we had so much in common.
“You shouldn’t feel guilty,” I e-mailed to Allen dad two years ago, about putting Eric in a residential school. “I don’t feel at all guilty,” Allen e-mailed back. I hope Allen wasn’t pissed at my comment – he didn’t seem pissed at all on New Year’s Eve, though he had less than a month to live – and I kind of thought I had a right to say something like “guilty” to him because we were the only two dads of kids with autism in the family. Allen and I were only a year apart in age.
There’s a scene in a Chinese movie called The Shower in which a big man with autism calls and calls and calls for his father, who has just died. I watched the scene once. I never mentioned the scene to Allen, but I bet he would’ve had a hard time watching it, too. They couldn’t find a way to tell the big Chinese man that his dad was gone. They couldn’t explain dead to the big man, and he’d always lived with his dad. How will they explain Allen’s death to Eric?
“That school for Eric may be the best thing that happened for their family in the last five years,” I told Jill. I can imagine what it’s been like at the end of visiting days for that family, driving way and watching Alex pace and cry in the window. Did he pace and cry? Or was he happier there after he got used to the place and made friends and began not to see his father as the center of a world he didn’t really understand?
“Eric.” I meant to say “Eric” there.
Tips for discussing death, dying and grief with people who have autism spectrum disorders
“Death, Bereavement and Autism Spectrum Disorders,” from the National Autistic Society of the U.K.
Read a Social Story about death from polyxo.com.








