Supporting bereaved children and young people with ASD
Just like other children, those with autism spectrum disorders (ASD) will need their grief to be recognized and understood and to be given opportunities to express how they feel. Because of the nature of their ASD, children with ASD may not respond to the death of someone close to them in the same way as other children but this does not mean they are not grieving. This information sheet covers some of the challenges bereaved children with ASD may face, and ideas for what might help.
Due to problems in processing information and in understanding hypothetical events, those with ASD may have specific problems in developing their own ideas about death and the rituals that surround it. Other difficulties they face may relate to:Mind blindness - difficulties in seeing things from another’s point of view. This may make it hard for them to understand other people’s feelings and behaviors, including not realizing that others can help.Information processing – difficulties in understanding the rituals surrounding a death and in understanding the implications of a death. For example, that because someone has died, this means they will not be there at the weekend, to take them to school or be there to celebrate a birthday.
Language and communication – difficulty understanding the abstract concepts involved when someone dies, unless other people use clear, specific and concrete language. Also, difficulty in communicating feelings and in asking for support.
Preoccupations (focus on specific things) – these may increase or grow more intense due to anxiety.Imagination, time perception and memory –may lead to difficulty in understanding the impact of a death. For example, understanding changes to routines, anticipating how things might be in the future and understanding events that they have not experienced before.As well as suffering the loss of the person that has died, children with ASD can be further distressed by all the changes that might happen in their day-to-day lives as a result of the bereavement.
If the death of someone close is expected, children or young people can be prepared in advance and in a gradual way. They may need to be prepared for visits to a hospice or hospital. It is particularly helpful if they can be told beforehand about any changes they might notice, for example in the ill person’s appearance (how they might sound, look or feel to the touch) or in everyday activities and routines.
• Keep to normal daily routines as much as possible.
• Use clear, concrete language, avoiding euphemisms and abstract ideas.
• Explain any likely changes in routine in advance, giving details about who will be doing what and when.
• Use pictures and photographs to explain what will happen and when and how. For example, pictures of the hospice, or of the taxi that will take them to school or to swimming from now on.
• Use calendars or other visual aids, for example, to mark hospital visits, as well as significant positive events such as visits to the park.
• It can be helpful to develop rituals to mark a death, such as lighting a candle when an animal dies. The same ritual can then be used when a person dies.
When someone dies, a child may need help in understanding the idea of death as well as opportunities to express their grief.
Answer the child’s questions as they arise – which may mean answering the same questions repeatedly. Answer simply, and honestly, and at an appropriate level for the child’s understanding. Give enough information to answer the child’s question, but without adding a confusing amount of detail.
Use lots of examples to explain that death is permanent and not reversible, in a way that is appropriate to the child’s understanding. Where possible, use pictures and real objects. Try to use a biological approach that is practical, clear, and visual, with concrete examples. For example, comparing a dead fish with a live fish, or observing flowers wilting and dying.
Prepare the child for ceremonies or rituals that will include them, by visiting the relevant places beforehand. It may help to use photographs and draw up an explanatory story using words and pictures to explain what will happen. Clearly explain what the child is expected to do and show what other people will be doing and saying, and what will be happening around them.
Help the child to learn how to recognize different feelings and emotions in themselves and others as well as learning appropriate ways of expressing their feelings. You can do this by using everyday situations and events to point out different emotions in other people (such as on TV programmes, in magazines and stories), by using consistent and simple language to label emotions from the child’s own experiences and by using pictures. Using pictures is particularly helpful for children with ASD, and a ‘feelings thermometer’ can help a child express the intensity of an emotion. You can do this by drawing a picture of a thermometer with a rating scale up the side. Encourage the child to show where they are on the scale to rate the strength of their anger/sadness/worry.Similarly, using a picture of a volcano to illustrate anger and how it sometimes ‘boils over’ can be helpful.Using a ‘comic strip conversations’ technique can help others understand what a child with ASD is thinking and feeling and can provide the opportunity to discuss things that the child might otherwise find difficult. This can help identify misunderstandings and highlight emotions that have perhaps not been openly expressed, or that have shown in other ways.
When someone important to a child or young person dies, memories are an important part of the grief process. The person may be physically gone from the child’s life, but the emotional bond will still be there. This is particularly true when a parent or main carer dies. Memories help any child to construct a sense of who it is they are grieving for and why. All memories have a part to play, whether of happy times or times that were not so good.
• A piece of fabric, from an item of clothing worn by the person who has died, carried in a pocket or made into a cushion, can be comforting.
Similarly, smelling the favorite perfume or aftershave of the dead person on a hanky can be reassuring.
• Putting together a memory box of physical reminders, chosen by the child. This can help give some insight into factors and events that are key to the relationship with the dead person. Try to include something relating to all five senses. A memory box, therefore, might include pictures of the person and pictures of things that person enjoyed, a small object that belonged to the person, a piece of fabric that is associated with that person (that may have a particular ‘feel’ to it), a CD of music that the person enjoyed or a tape recording of them speaking, and something that reminds the child of the smell of that person (such as perfume, aftershave, toothpaste or deodorant).
Listening to audio tapes of the voice or favorite music of the dead person may be familiar and comforting.
• Using photographs can help to create a time line to spark off memories of significant events, and then build a life story of the person.
