Autism and Death: How to Prepare Your Autistic Child for the Death of a Loved One
When we parents of Autistic children make detailed preparations for our children growing up we make sure they can perform the basic functions needed to survive, if possible; and, we often prepare for what will happen to them if something happens to us. What about the other people they will lose throughout their lives though. Do we adequately prepare them for that? Often, we don’t prepare our children for the death of loved ones in advance. Seeing as though death is an uncomfortable topic of conversation for many people we may avoid bringing the topic up until the unfortunate event where we have lost someone that we love. This is also true for “normal” kids as well. We often just don’t prepare them well enough. With Autism the preparation is more readily required for basic functioning after the fact though.
As Autistic individuals run on routine they benefit from advanced warning for changes that are going to happen to them in their lives. This includes all changes that are going to happen to them. Any disruption in their normal routine is challenging for them. Being given advanced warning of what to expect before the death of someone they love is definitely beneficial to the Autistic individual. The death of a loved one interferes with not only their daily routines but with their stability of emotions.
Understandably not being given advanced warning can reasonably throw them from their routines and leave them without the needed understanding of what death is. They need to prepare themselves for the fact that they will not see nor speak to the loved one again. Imagine if you have an Autistic adult who has never lost someone and has never been prepared for what it will be like when they do lose someone they love. They’d be emotionally devastated. This is a tough situation for any person to take, when you add Autism into the mix things can become complicated very fast.
So, what can we as parents do to prepare our Autistic children for the inevitable experience of losing someone that nobody in your family can imagine living without? Per Jenna Wharff, ED. M., there are a few steps you can take beforehand that can help your Autistic child be more prepared for this ultimately heartbreaking situation that each of us are touched by at some point in our lives.
First, remember to teach them that everybody grieves differently
We all feel sadness and grief for the ones that we lose, it is important to explain this to your Autistic child first and foremost. Allow them time to understand that they are going to feel sadness when somebody dies, but that it is a normal part of the life cycle. We all mourn. They must understand that everybody feels their sadness in a different way though; it manifests itself differently in each of us. That may be an easy detail for the “average” person to understand, but keep in mind that to a person with Autism this concept may not come as easily.
Make sure your child understands that there is no right or wrong way to grieve losing someone they love. As Jenna Wharff pointed out, your child may see someone at a funeral crying and become anxious at the fact that they are not crying as well. Advanced preparation for this event may have kept their anxiety level a little bit lower. It is also pointed out that it is important to prepare your Autistic child/teenager/adult for the fact that you, their caregiver, may grieve too. That you may cry. Seeing their caregiver in distress is often a trigger for Autistic individuals. They can and will benefit from advanced warning that you will too be upset.
Talk about death
Talking about death before it happens allows for the Autistic individual to ask questions and process the answers without dealing with the emotions that accompany a death at the same time. It may help to discuss death as it happens in daily life with them. As Jenna Wharff suggests, even discussing the death of a simple housefly when it happens can help prepare an Autistic individual for a death when it occurs. Talk about how it can’t fly anymore and how its wings and legs can’t move anymore. Celebrity deaths and deaths in the community can be discussed as a tool to help teach them what death is as well. If you have a loved one that is sick, talk about it with your child. Talking about Grandma’s overall health and her visits to the hospital can help your child understand the end stages of said grandparent’s life when they do come.
Use literal language
When you talk about death with your Autistic Child use as concrete words and concepts as possible. Talk about the actual meaning of death. Tell them about the funeral process before they experience one. Make sure they understand that the loved one won’t be able to talk or look at them. That they won’t be able to move. Make sure they actually understand that their bodies and minds no longer work.
Keep in mind that the words you choose to use will also affect your child. Phrases like, “passing away” can be very confusing for an Autistic mind. It is understandable that using phrases like these may be easier for you, but for your child they send their mind into a whirlwind. People with ASD tend to be very literal people. They don’t understand that “passing away” is the same thing as dying in most cases. It is pointed out that it can be especially detrimental to use the phrase “they are sleeping” to a child with Autism when explaining death. So, keep that in mind. Doing so may give them anxiety about going to sleep and not waking up themselves. Just be mindful of the words you use.
Not to start a religious conversation, but another popular phrase used can be just as detrimental if not explained properly. Many parents will tell their Autistic child that the loved one has “gone to heaven.” With a “normal” child this may induce emotions of comfort, for an Autistic child that may leave room in their minds for the belief that the loved one may come back. After all, when someone goes to the store they eventually come home. Making sure you explain the differences literally can make all the difference.
Prepare them for the funeral and services before you go
This step is just as important as the previous steps as funeral services are normally very structured in one form or fashion. Preparing your child beforehand for the “concrete aspects” of the services will help ease their anxiety and yours. Explaining to them what happens to the body, whether the person is to be buried, or cremated (and the difference in the two) is an important point to bring to attention.
If possible, involve your Autistic child in the services says Jenna Wharff. It can provide them with a sense of closure and a chance to say goodbye to the loved one, just like the rest of us. Just don’t forget that they will need detailed instructions on what is expected of them and why they are doing said task.
Another very good pointer is to give your child/teen a few lines to say to people at the funeral and services. A simple task of them saying, “Thank you for coming” may be enough to make them feel socially accepted during such a hard time in their lives.
No matter how you do it, preparing your Autistic child/teen/adult for death is an important part of parenting and an important part of life. Let’s not take it lightly.