Coping with death can be particularly difficult for individuals on the autism spectrum for many reasons. First, it means change and loss. Second, death is fraught with emotion, and the adults helping the child learn what death is all about are usually the same adults coping and dealing with their own loss and sadness, making them not as not emotionally available to help the individual on the autism spectrum. Third, death is abstract and intangible. It is not something one can see or touch. It makes it very difficult to explain to someone on the autism spectrum. Additionally, death comes with ceremony and ritual which incur changes in routine and scheduling. Guests arrive, or the family travels from home. This change in routine and expectations can be devastating.
Explaining all of this can be difficult at any time, but even more so when one is already upset. Expect the individual on the autism spectrum to react to all that is going on around him or her. Behaviors may be more extreme and reactions may not always be socially appropriate. When learning about a death, the individual on the autism spectrum might show a range of responses, including laughing, crying, or showing little change in facial expressions. These reaction can be difficult to predict and the individual’s outward expression of emotions may not always match their internal emotional experience.
What can you do?
If a loved one becomes ill, it is best to talk to the individual on the autism spectrum about the illness, possible hospitalization, etc. These discussions can be preparation for dealing with the healing, the transition to moving the individual to a rehabilitation facility, or even death.
As with explaining anything to an individual on the spectrum, be as clear, as precise, and as factual as possible. The message should be consistent among all who speak to the individual on the autism spectrum. Mixed messages will cause confusion and anxiety. Saying the person who died “Went to sleep” is not a good idea, because it is not true, and may cause the child worry about going to sleep.
There are other things to consider as well, including whether the individual on the autism spectrum should attend the funeral or memorial service or who the individual might be left with if not attending.
Consider enlisting the help and support of a counselor, teachers, or other support staff who know the person on the spectrum well.
Information and books for typical children about death may help support the entire family. Sometimes a child on the autism spectrum can benefit from a book written for a younger child.
- How to Talk to Children with Autism about Death
- Death, Bereavement and Autism Spectrum Disorders
- Bereavement and Grief Resources, from Autism Speaks®