How to Talk About Death With ASD Children

It is a horrible place to be as a parent, believing you have done everything in your power to help your child through a difficult time, only to discover it wasn’t enough.

How to Talk About Death With ASD Children

I’m not certain when I recognized that I let my son down, but partway through his middle school years, it became obvious to me that my child had been silently, subtly grieving the loss of his father for seven years and everything I had done to help him had not been enough.

Numerous online resources tell us that oftentimes children grieve very differently than adults. When a child loses a loved one, they may act out, have nightmares, become irritable or withdrawn, possibly experience loss of friendships, and begin to do poorly at school. As a parent of an autistic child, that laundry list of telltale signs wasn’t very helpful.

My son Ryan was four when his father died, and at that time, he was already a very quiet and solitary child with limited communication abilities. His behaviors in pre-school did not deteriorate…his difficulties navigating over-stimulation and comprehending social cues did not waver, and I watched with curiosity and concern wondering how he was processing the absence of his father.

All cultures have rituals of dying and death within communities. For us, of course, it may include a funeral, a memorial, a wake or sitting Shiva. It is an opportunity to say good-bye, honor our sadness, and begin a healthy response to grieving. At my husband’s absolute insistence, there was no funeral, memorial, or gathering.

He was adamant that he did not want any celebration of his life. Torn between honoring his wishes and respecting the needs of his adult children, I gave them Lee’s ashes so that they could celebrate and mourn their father privately. Ryan and I did not attend their ceremony. Besides being knocked sideways with the loss of my husband, I was worried that Ryan would be traumatized by the spreading of his father’s ashes; how was his four-year-old self going to reconcile that the cedar box I gave to his half-brother held what was left of Dad?

So instead of participating, Ryan and I planted a small Japanese maple in honor of our love and remembrance of Lee, a place on our property for reflection and a ceremony to ease into our new reality. I thought that was enough.

As Ryan grew older, I placed more photos around the house of his father and him together, at the beach, camping and playing the piano. I was trying to keep the memory of his father alive and provide an opportunity for us to talk about Lee and his death, but Ry never wanted to engage, and over time I left the subject alone thinking he was okay and had accepted Lee’s passing with little difficulty.

I found it unusual that Ry never talked about Lee or wanted to learn more about him, but I was so occupied with our day to day, that I parked my concern in the back of my mind and kept moving forward with our lives.

Time passed, and Ry entered that difficult period called middle school. He was struggling more and more with transitions accompanied by outbursts, and I was at my wit’s end trying to get him the help he needed. As luck would have it, I found a wonderful counselor that began to meet with Ry weekly.

After a time, Michael wanted to broach the topic of Lee. I agreed it was a good idea and slowly but surely, Michael entered into a one-way conversation with Ryan about his father. After months of trying, Michael felt that he wasn’t making progress and decided to give the topic a break. The next month as we were driving home from his afternoon appointment, Ry turned to me and said, “Tell me about my father.” Surprised and simultaneously relieved, I asked him, “What would you like to know?” It was the first time Ry had mentioned his dad since before Lee had died. Can you imagine? My son had not spoken of his father for almost seven years, and now he wanted information… I wanted to cry.

That afternoon we spent the better part of an hour looking at old photos, Lee’s birth and death certificates, our marriage license and his old music books so that Ry could add them to his growing pile of piano music. As Ryan’s interest began to dwindle, he asked for the birth and death certificates and disappeared to his bedroom. Wondering, I secretly watched as he thumbtacked them to his wall… without knowing, Ry was creating his own small shrine to honor his father’s memory.

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The next weekend, I decided to ask if he wanted to visit the site where his father’s ashes had been spread. Twisting his ear (anxiety tic), he said yes and we were in the car and heading up an old logging road on Sumas Mountain. As we climbed up the road, I noticed that Ryan was getting more and more anxious and I was beginning to second-guess myself, wondering if this had been a good idea, as I kept driving.

When we arrived, I simply turned to Ry and said we are here. I quietly reminded him that he did not need to get out of the car if he wasn’t ready, but I would like to take a moment to say hello to Lee’s spirit on this hillside and would he mind waiting for me. As I stepped out of the car, I could hear Ryan open the passenger door, and he joined me as we walked to the viewpoint.

I took this opportunity to hold his hand and tell Lee all about Ryan and how proud he would be of his son. It was a short and simple ceremony, but it resonated deeply for both us, and with lightened steps, we headed back to the car and home.

In the past two years, Ry has lost his grandfather and two uncles. With these deaths, we have openly discussed the cause, what happens when and after we die and openly shared our sadness. Instead of trying to protect him from death, I opened the door for us to more openly and honestly discuss it, which allowed him to have a healthier response to grieving and loss.

I’m no grief expert, but I did make several distinct changes over time in how I handled the loss of a loved one with my son. I allowed him to be an active participant in all things and respected his decisions in regards to his limits. I openly talked to him about my sadness and let him see me openly grieve.

It was important for my child to see me cry—a healthy response to my loss, and that gave him permission to explore his own emotions in a safe space. I also acknowledged that just because he didn’t want to discuss it, he was feeling loss and that I needed to remain vigilant, supportive, and sensitive to his needs.

Handling the loss of loved one can be difficult in the best of situations, but I find it more challenging with our special children. Don’t be afraid to seek professional guidance and know that regardless of your child’s response, they are also trying to navigate the experience and need your help. Love the life you live…

From Ryan Cunningham—I feel sorry for having lost my father, but at the same time, I am quite happy to live with a widowed mother. I have hung my father’s birth and death certificates on the south wall of my bedroom because my father was one of my parents, just like my mother is. (I also have her birth certificate there.)

This article was featured in Issue 91 – Great Back-to-School Strategies

Kimberly Reeves

Kimberly Reeves, MEd, is a professor of biology at Whatcom Community College in the Pacific Northwest US. A firm believer in the value and strength of community, Kimberly has served as a board member of Families for Autism Care, Education, and Support (FACES) Northwest, a local summer day camp for children with autism in Whatcom County, Washington, has consulted with her local school district, and assists with her son’s Special Olympics activities. She provides informational support to families processing an autism diagnosis or struggling to understand and navigate their rights and responsibilities as parent advocates and guardians as outlined by the federal government. She and her son Ryan are currently co-authoring a book, Raising Ryan, and are enjoying this experience together. Kimberly welcomes questions or comments. For her book in amazon Raising Ryan: Living with Autism