Death After Illness

If you had the opportunity to talk about the possibility of the approaching death during the illness, that will make this conversation somewhat easier, but finality is always hard.

• At the time of death, share a reminder of their past experiences: “Remember that grandma was very sick for a long time. She died today.”

• Recognize that after someone’s long illness, family members may struggle with conflicting feelings. They may wish the person was still alive while also being relieved that the suffering and a period of uncertainty has ended. Your autistic loved one may have been frightened by the physical changes they observed in the person who was dying, such as loss of hair, loss of weight, scars, or connections to tubes and monitors, that may prompt questions in the days and weeks following the death.

• Provide choices and support related to when and whether to see the deceased before or during a funeral. If the person is reluctant, offer alternatives such as a virtual viewing or looking at photographs. For some people, seeing the deceased’s body is important. Communicate the options and let your loved one with autism make the choices. Trust their intuition and use it as your guide. Visit the Role of Rituals section to learn more.

• Offer an important object or memory of the person. For example, “I know that grandma wanted you to have this special blanket that the two of you put over your legs while you watched television.”