How to explain death to a child with autism

 "Marshall’s" mother "Georgia" called early one morning. She said her mother "Mary" was very ill and it didn’t look like she would make it through the day. Georgia was crying on the phone. "Teacher, I don’t know how to explain what is happening to Marshall. He is very close to his grandmother. She lives near us and is always a big help to me. What should I do?"

The teacher sighed. "Georgia, I am so sorry. That is a horrible thing to go through for anyone. I hope your family is nearby. Don’t worry. We will work with Marshall at school. Right now, you stay focused on your mother. Call us later and let us know how it goes today." As the conversation ended, the teacher looked over at Marshall. She knew death was hard for any family. For a child with autism, it can become even more challenging. Yet, with lots of visuals and some very practical suggestions, Marshall would be all right over time.

The teacher began to write a very simple social story on death for Marshall. She used the program "Writing with Symbols" along with family photos and Google Images. The family had been at school during the annual Christmas Party. It was easy to add a family picture into the story for Marshall to read later with his parents. The teacher had written social stories about death in the past. She knew that the level of any social story depended on the child’s age and comprehension ability. So, the teacher started writing a simple straight forward one for Marshall. The story began, "Grandma Mary Died." Then the story went on to say, "My Grandma Mary grew old. Grandma Mary lived a long time. She died because her heart stopped. Her breathing stopped too. Now, Grandma Mary does not feel sick. She does not hurt anymore.

"Grandma’s body is still here but she is not in her body anymore. Grandma is like an egg without the shell. I will miss my Grandma Mary. I am sad. My family is sad too because we can’t see Grandma anymore. I can cry because I feel sad. Mom and Dad are crying too. It is okay to be sad and cry. My mom said Grandma is in heaven. Mom said it is like going through a new door where Grandma can feel good again. The door is locked for me until I die. Then I will go through the new door and see my Grandma Mary. I will feel better after some time goes by. I love my Grandma Mary. Grandma Mary has died."

The teacher was hoping later on to include more family pictures of Grandma Mary aging. This would be in addition to pictures of sad faces, clocks, an image of heaven, a visual of crying, and doors to help the boy better understand the social story.

Death can be explained on a variety of levels for even the smallest child. Fortunately, the Internet has a lot of sites with social stories available for children with autism. Social story topics range from potty training, to behavioral issues to how to make and keep friends. Some social stories are loaded with visuals while others are primarily word based with a few pictures included in the text.

Social stories are one major step in helping a child grasp death. Also, consider creating a visual schedule for the child. Make it clear to the child how long they will stay at a funeral. A first/then schedule is helpful for a younger child. Marshall had a timer and he knew that if he sat quietly, he would get pizza later. The family also had activities that the boy liked while sitting in the mortuary. When the timer rang, a family member took Marshall out for his preferred reward of pizza. The boy did really well because he knew what was expected of him. The family included a picture of Grandma Mary on the casket and also where her body was eventually buried. The boy didn’t fully understand what death was. However, he did know where Grandma Mary’s body was throughout the funeral.

Georgia was surprised at how well her son behaved during all of the events surrounding her mother’s death. Preparation was the key to avoiding potential problems that might unexpectedly occur during the funeral.

Pamela Gross Downing, a special education teacher, can be contacted at downpamg@aol.com.