It wasn’t until the sad passing of my son’s grandmother, that I realized what few resources were available to assist our family with explaining the loss to my son, Richie. Richie has autism and relies heavily on the use of pictures for choice making and requests, he also uses gestures and body language for expressing discomfort or happiness, and hand-leading for desired items or activities. Richie, at thirteen-years old, had never lost anyone close to him before. When his grandmother was in the hospital, his father wondered how we would explain this to him.
I started to do some research and found that there were many resources available for children without disabilities, but even the simplest and sweetest book with few words can be inappropriate for a child with Autism. For example, telling Richie that “Grandma has passed on to a better place,” wouldn't mean a whole lot to him. In fact, it would possibly raise more questions, such as, “Where did she go? Is she coming back? What’s a better place than where you’ve lived all your life?”
Even though Richie still struggles with communicating with others, I know my son is smart and understands way more than we give him credit. I also know that he has a difficult time with understanding many things that other children his age might. Children and individuals with autism and some other developmental disabilities have difficulty understanding:
Even though Richie still struggles with communicating with others, I know my son is smart and understands way more than we give him credit. I also know that he has a difficult time with understanding many things that other children his age might. Children and individuals with autism and some other developmental disabilities have difficulty understanding:
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Metaphors - "Don't judge a book by it's cover." |
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Idioms – “It’s raining cats and dogs.”
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Double meaning phrases – “Please take a seat.” |
And sarcasm – “Wow, that was really funny.”
I had the great pleasure of meeting Dr. Temple Grandin, a Professor of Animal Science, most notably known for her invention of humane livestock handling systems that is used by over a third of America’s livestock industry. Grandin has autism and she states that she thinks in pictures and her memories are associated with thousands of photographs and pictures she’s taken with her mind. She states many individuals with autism are visual and literal thinkers.
If your family is dealing with preparing for the death of a loved one due to terminal illness, try to begin by explaining to your child that death is a natural part of life. Explain how every living thing dies. Use examples, such as, a stepped on insect, a turtle or squirrel that got run over by a car while trying to pass the road, or talk about how animals eat their prey in the wild. These every day examples will help explain that death is experienced by everyone. Talk about how everyone in the family will be sad for a while because they’re going to miss their loved one. Tell him or her that people express sadness differently. Some people cry a lot, some people are very quiet, some people get very angry and some people may want to be left alone. Please make sure to tell your child that it’s okay to remember and talk about the person their missing too. It might take your child some time to learn about what has really happened. Give your child the time needed to take in the information they’ve learned. Allow them to ask the questions and talk about the deceased family member.
When explaining things to children with autism, we need to use direct, concrete statements that are to the point. While it may be tempting and sweeter to tell your child that “Grandma has left us to go to a better place,” or “Grandpa is going to sleep for a long time,” these statements will only confuse your child. “Grandma’s heart was not working that good anymore. Then one day it just stopped working and beating.” If your child is non-verbal, try to provide as much concrete information as possible. Death means the heart stopped beating, there’s no more breathing, talking, or movement. Using pictures to help illustrate the point also helps to convey the message for visual learners.
Further explanation about after death will depend on your family’s religious beliefs and traditions. If you wish to explain heaven to your child, make sure to be clear that heaven is not a place you can visit or call. If it’s appropriate and you plan to bring your child to the funeral, a picture book will help him or her understand what to expect. A picture book or social story will help tremendously with explaining the death, funeral, beliefs and traditions of your family. Because so many people have different beliefs, it might be easiest to create your own. I created a simple and short one using PowerPoint:
When explaining things to children with autism, we need to use direct, concrete statements that are to the point. While it may be tempting and sweeter to tell your child that “Grandma has left us to go to a better place,” or “Grandpa is going to sleep for a long time,” these statements will only confuse your child. “Grandma’s heart was not working that good anymore. Then one day it just stopped working and beating.” If your child is non-verbal, try to provide as much concrete information as possible. Death means the heart stopped beating, there’s no more breathing, talking, or movement. Using pictures to help illustrate the point also helps to convey the message for visual learners.
Further explanation about after death will depend on your family’s religious beliefs and traditions. If you wish to explain heaven to your child, make sure to be clear that heaven is not a place you can visit or call. If it’s appropriate and you plan to bring your child to the funeral, a picture book will help him or her understand what to expect. A picture book or social story will help tremendously with explaining the death, funeral, beliefs and traditions of your family. Because so many people have different beliefs, it might be easiest to create your own. I created a simple and short one using PowerPoint:
I created this story for Richie to help explain the loss of his grandmother:
| good-bye_grandma_dona.pdf |
Shortly after his grandmother's passing, Richie visited his grandfather at their home. He walked around the house searching for his deceased Grandmother. We made sure to read the book we created and speak to him often about his loss. Richie not being able to talk to us didn't matter at all. We know he loved her very much and we know he misses her.
Please note that some of your family’s traditions may change or interrupt your child’s daily routine, possibly causing behavioral issues as a result. Be sure to have a plan for dealing with certain behaviors and try to have things that comfort your child on hand (iPad, snacks, music, favorite toy, etc.). If the experience is too overwhelming for your child, ask someone you trust well to watch him or her at your home (there is nothing more soothing than the comfort of your own home). If you’re the one hosting the traditional event(s), make sure your child has an opportunity to escape or to be alone if he or she needs to be (if they become overwhelmed).
I know it’s a difficult topic, but please don’t avoid teaching your child about death and loss. Please don’t assume that because your child has a disability or cannot speak that they don’t experience confusion, loss, or emotional distress. Your child will notice that someone important in their life is missing. They’ll need to be reassured that whatever has happened to the loved one won’t happen to you, or other important family members.
We don’t want our children to draw their own conclusions about what’s going on around them. Feelings of confusion about what’s happening around them could potentially increase anxiety and amplify feelings of loss. We want our children to be included in the process along with the family, even though it is a difficult one. We want our children to feel happy, safe, and loved. We want our children to know that although death and loss happens to everyone, they don’t have to worry about losing us anytime soon. Our children need to feel comfort and secure in knowing that they’re going to be in a loving family that they can count on for a long time.
Please note that some of your family’s traditions may change or interrupt your child’s daily routine, possibly causing behavioral issues as a result. Be sure to have a plan for dealing with certain behaviors and try to have things that comfort your child on hand (iPad, snacks, music, favorite toy, etc.). If the experience is too overwhelming for your child, ask someone you trust well to watch him or her at your home (there is nothing more soothing than the comfort of your own home). If you’re the one hosting the traditional event(s), make sure your child has an opportunity to escape or to be alone if he or she needs to be (if they become overwhelmed).
I know it’s a difficult topic, but please don’t avoid teaching your child about death and loss. Please don’t assume that because your child has a disability or cannot speak that they don’t experience confusion, loss, or emotional distress. Your child will notice that someone important in their life is missing. They’ll need to be reassured that whatever has happened to the loved one won’t happen to you, or other important family members.
We don’t want our children to draw their own conclusions about what’s going on around them. Feelings of confusion about what’s happening around them could potentially increase anxiety and amplify feelings of loss. We want our children to be included in the process along with the family, even though it is a difficult one. We want our children to feel happy, safe, and loved. We want our children to know that although death and loss happens to everyone, they don’t have to worry about losing us anytime soon. Our children need to feel comfort and secure in knowing that they’re going to be in a loving family that they can count on for a long time.
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