by LeeAndra Chergey
There is no perfect way to talk to anyone about death. Everyone feels, processes, and handles it differently, as if grief were a snowflake, imprinting a unique pattern on each of our souls. At this moment, I realize I don’t need to put into words what has happened to Adam, I don’t need to simplify it or hope to get a response that he understands. Watching this baby boy cry out Adam’s name—I know. He knows. All I’ve wanted for him is to feel. We’ve been told people with autism have no empathy; they do not understand emotions; they appear not to care when someone is crying. Yet here he is, sobbing over his friend. And I am so sorry he has to feel this. I have prayed he would feel like “normal” people. But not this; not death; not yet. Not this deep sadness that right now feels like it has no end. –LeeAndra Chergey, excerpt from “Make a Wish for Me”.
The above is taken from a painful chapter in my forthcoming memoir. In this passage, I’m sitting with my son and he unexpectedly cries out Adam’s name and then proceeds to sob. An outburst of emotion I actually understood in the early days of diagnosis, but was surprised Ryan was able to show. Adam was one of our therapists and passed away in his sleep. My son was four at the time and had been in therapy for two years with Adam. Ryan clung to Adam like a baby baboon to its mother’s back. They had a mutually understood bond from the beginning. To lose Adam was like losing one of my own family.
But it’s not my pain I want to call attention to: it’s my son’s pain. A pain I didn’t know he could feel and I certainly didn’t think he could or would share with me-possibly ever. Yet, there we were a week after Adam died, a hole ripped open in our lives; and the realization hits me: Ryan had conceded to that fact Adam was gone. As I cradled him in my lap, his tears mixed with mine flowed openly.
How terrible for any child to understand what death is, or at least that Adam was ‘gone’. I can’t imagine in the tangled synapses of his “wired-differently” brain how he sorted death out. How he dug deep and came to the awful conclusion of the finality. I was both shocked at his outburst and amazed that he could find a way to understand and then show me his pain.
Searching deep for a bright side to this, I recognize I was given a sneak preview into my son’s heart and soul. He could feel pain, he could sense my pain, and he could express his. What a bitter moment in the life of a parent of an autistic child, yet you must swallow the unpleasant pill that is called progress. Even when it hurts like hell.
The understanding Ryan came to about death has stayed with him. He equates sickness or injury with death. I don’t recall telling him Adam was sick, because he wasn’t, but in the early days of Adam dying it’s possible I said it. Whether I did or not, he apparently paired the two. So now, when someone is ill he gets very serious and sometimes will ask: “are they going to die”? It is a repetitive heartbreak for me that he had to learn at such a young age the painful reality of death.
I have been blessed with other glimmers of Ryan’s empathy. Sometimes it comes out daily often it’s hidden for weeks. But it’s there. The compassion he has for his sister often goes beyond even a typical child. Sometimes he is compelled to make sure she is okay before he can complete any other task. If she (or anyone else) is crying, he is relentless until it stops.
All the hours of behavior therapy showing him picture after picture of faces so he could understand emotions obviously sunk in. I believe he understands so much more than he actually does show me. But what he does reveal remains a blessing—one I don’t take for granted.
The still waters that lie beneath his eyes are so often a mystery, but even if Ryan wasn’t able to express his empathy, I believe I would sense it. Even when he didn’t have words, he found ways to get me to understand him. Sometimes with his hard little fists, sometimes with a touch on my hand, or sometimes just with his eyes. He has always uncovered a way for me to understand him. Even if it is just a “sensation” I get, it’s enough for me. And I bet any mother out there will agree.
Tips for explaining death to an autistic child
When Adam died, it happened so fast, I sort of spit out information to Ryan. But after a few days, I tried to be more methodical about making Ryan understand the concept. With no help from the Internet (at that time), I relied on advice from his therapists and followed my heart.
Say exactly what happened, autistic children are very literal:
“Adam died today. He went to Heaven.”
-Depending on the age, explain how the person died:
“Adam’s heart stopped working, so he died.”
-Keep talking about the person so they don’t forget them.
Eight years have gone by and Ryan still remembers Adam and knows he’s in Heaven. After reading this you may think: that’s what I would say to any child. Exactly.