Explaining Death and Coping with Loss
Everyone will experience the death of a loved one at some point in their lives. Talking about death and dying can be difficult, and it can be hard to know how to best support someone through a loss. It is important to recognize that everyone experiences the emotions of grief and needs to be supported through the grieving process. For some people on the autism spectrum, the reactions they display may be delayed, their expressions of grief may differ from what is seen in neuro-typical people, and may include changes to their usual behavior.
How to Help
Here are some of the key things that parents, caregivers, friends, and other support people in the grieving person’s life can do to help. As with any person on the autism spectrum, it’s best to take a very individual approach, and that the support comes from someone who knows the person well. Knowing a person’s individualities and sensitivities makes it easier to work out what may be most difficult for them and how to address it. For example, it may be the lighting in a hospital room, attending a funeral and seeing others cry, or worrying about who will take them to school now.
Manage your own expectations:
- Don’t expect a person on the autism spectrum to demonstrate their grief in the same way as other people.
- Expect that they may seek solace through isolation rather than social contact.
- Expect a general increased sensitivity. For example, they may be quicker to anger than usual or sensory sensitivities may be amplified.
- Expect a rise in pre-existing self-stimulatory behaviors (for example, rocking, tapping, flicking) or special interests, both of which can have a calming influence.
- Don’t be afraid if they show an intense interest in the subject of death and if they seek ‘the facts’ surrounding a death.
Prepare the person on the autism spectrum as much as possible with an understanding of death and grief. This can help reduce the anxiety that unexplained changes may produce for them when someone does die. Helping someone to understand the abstract concept of death – whilst not a necessary factor in experiencing grief – is also considered to help a person through grief and loss. Here is a list of books.
Explain death in concrete, practical, visual ways, for example, through using a life-cycle approach with animals. For some people on the autism spectrum, it may also be appropriate to explore situations of grief and loss when opportunities arise in everyday life – for example, when a character in a movie dies. Use visual and physical examples to illustrate what being dead means and to explain the irreversibility of death in a way appropriate to the person’s understanding. Here is a list of social stories that may help.
Use clear, accurate, simple language when talking about death and when answering any questions that the person on the autism spectrum might have. Avoid using metaphors and euphemisms (for example, “he went to sleep”), because a person on the autism spectrum may take literal interpretations of language, and this can result in confusion and anxiety. Consider also using visual supports to aid the person’s understanding of death and grief (for example, a social story may be appropriate in some situations). Don't be afraid of an interest in seeking 'the facts' surrounding a death.
Prepare others for how the person on the autism spectrum might behave, and explain they are not being rude or unfeeling and will be experiencing grief but may be expressing it differently.
Maintain routines as much as possible, as this will help alleviate stress and anxiety, and will reduce the impact of any ‘secondary losses’, which are those subsequent losses that can occur because of the death (for example, a person who can no longer go on weekend camping trips because his father, who used to take him, has died). If routines must change, wherever possible prepare the person on the autism spectrum.
Include the grieving person in the rituals surrounding death, such as the funeral and viewing of the deceased’s body, if possible. Support their understanding of what happens in these social situations by preparing them beforehand. Give them explicit and clear information of what to expect and explain the hidden social rules directly. Visual aids can help prepare a person on the autism spectrum for proceedings, explain death/rituals surrounding death, and plan/catalogue events. They can also help with understanding timelines, sequences of events and changes to routine. Calendars and charts can help prepare for hospital visits and put significant events into a wider context.
Prepare for participation in social events, such as church services, by visiting where it will happen, taking photographs, or making a video tour. Plan management tactics, for example identifying who will do what and when. Also, have an exit strategy planned in case events do not go as predicted.
Help the grieving person to learn appropriate coping strategies to help them through their grief. For example, developing and using a ‘feelings chart’ may help the person identify how they are feeling and what they can do when they have those feelings.
Ensure that the person’s usual methods of self-soothing are available at times that are particularly likely to precipitate distress, anger, or anxiety. Listening to audio recordings of the voice or favorite music of the dead person may also be familiar and comforting.
Therapy sessions such as individual counselling or joining a bereavement support group can also help some people on the autism spectrum to cope with their grief and loss. HeartPlay community resources
Information shared in this post is used with Aspect’s Permission. www.autismspectrum.org.au