Understanding Death on the Autism Spectrum

How old were you when you understood death? Understanding death on the autism spectrum is a difficult concept to grasp. Spoiler alert regarding Santa: I always thought I would remember when each of my children discovered Santa wasn’t real. I assumed the information would be received like a telegram during war time and followed by tearful denial. Instead, I have no idea when this event happened for the girls, or how or why. It just became a fact, like a cavity. I do have clear recollections of a lot of other pivotal childhood events. Yesterday was one of those days. It was the first time my son understood death.

My husband’s grandmother died on Christmas Day this year. She was a nice little old lady who liked to sew, bake pies and attend church. She passed peacefully and relatively quickly after a fall in her own house where she lived the majority of her 95 year life. We live six hours away, so the children didn’t see their great grandmother often. While sad, we should all be so lucky to live to such an age, not bury any of our children and dodge the nursing home bullet.

The cousins played carelessly in the church pews waiting for the ceremony to begin. After the funeral, we drove with our lights on the short distance to the cemetery for her burial. We crowded inside the tent and listened to the Pastor preside over her rose-covered casket. In the middle of the service, a very peculiar thing happened. My son started to cry. I’ve seen him cry many times, but never in response to something that happened to anyone else. Empathy is one of the concepts we focus on in intensive ABA therapy, as it is not something that comes naturally to Devlin, or to many folks on the autism spectrum. Overwhelmed, Dev fled the crowd and began weaving in and out of the tombstones. I followed and asked him why he was upset. At first he said, “My dad died,” but corrected himself immediately saying instead, “My great grandmother died. I don’t like that she died. We’ll never see her again. I don’t want to never see her again.” We talk about the death of his father when Dev was two, but the fact of his father’s death has never registered on a genuine level.

He wouldn’t let anyone but me talk to him, and I finally sat with him in the car so he’d stop running away. As tears ran down his cheeks he told me he would miss her and that she meant a lot to him. I’m not entirely sure he was mourning his great grandmother so much as he finally got what “death” was. Death, in all it’s finality and suckedness. It was a beautiful thing to watch him understand. We’ll leave explaining how Santa delivers presents although we don’t have a chimney to another day.