It can be difficult to discuss death and bereavement, and to help a child or adult with autism to cope with a death. Every autistic person, and their level of understanding, is different. You will need to adapt any approach or guidance for the person concerned.
Find out about preparing the person, explaining illness, death and religious practices, recognising grief, and ways to remember the person who has died. Find useful resources and sources of support.
Involving and preparing
An autistic person will understand and adjust better if they are involved and prepared in advance, as much as possible. They may have become aware that the routines and atmosphere of the household have changed, and display challenging behaviour because of this.
You will need to decide how much detail is appropriate, but if someone in the family is ill, it is better to explain:
- what is happening
- why they keep going to the doctors or spending time in hospital
- any change, or expected change, in the person's appearance
- the progression of the illness, by charting a timeline alongside other significant events such as birthdays, school play, or holiday
- any changes in routine, such as who will pick them up from school.
This will remind the person about those things in their life which will remain the same, such as going to college every day.
Your explanation of what death is will be determined by your own beliefs and values. You could explain death within a life cycle, possibly using insects, plants or animals to demonstrate this (Allison 2001). This biological approach is practical, clear, and could be presented visually. You could even use real insects or flowers to demonstrate the difference between living and dead.
Be careful about the language you use. Avoid euphemisms such as “gone to a better place”, or “we’ve lost Grandma”. These may be taken literally. For example, if you describe death as "like going to sleep", the person may become scared of going to sleep at night. Something simple such as "sometimes people's bodies become worn out and stop working" may be appropriate. If they want to know what this means, or how it will affect their lives, you could say that they "will not see Grandma again".
In the case of a sudden death, you may need to reassure the autistic person that this will not happen to them, and how you know this. You could say that usually only people over seventy years of age die, and it is rare for children or people younger than that to die. However, if you do use this, think very carefully about the likelihood of them experiencing a younger person's death.
Religion, ceremony and ritual
Explain any spiritual or religious practices that your family observe at the time of death. This might include visiting in advance the place of worship, or place where any ceremony will be performed, speaking to the person leading the observance, and introducing the person to any other unknown practice.
It may help to establish a ritual within the family when someone dies, whether this is a pet, family member, friend or even a personality on TV. This ritual might be lighting of a candle, while everyone thinks about the person or animal who is being remembered. This will give the person a particular routine to follow and will may lessen any ‘socially inappropriate’ responses to the announcement of a death.
You may not recognise the autistic person’s displays of grief, but any difference in their behaviour may be an expression of their confusion and loss. These behavioural changes may occur immediately, or a long time after the death. You may notice a reoccurrence of these or other behaviours at significant dates after the death, at an anniversary, Christmas or birthdays.
There are recognised approximate stages of bereavement (Allison 2001).
- Shock, numbness, denial.
- Despair, turmoil and acute grieving. This can include anger, guilt, anxiety, fear, panic, depression, pain, appetite disturbance, breathlessness, illness, increased need for sleep, sleeplessness, hyperactivity, nightmares, regression, loss of skills.
- Recovery, including acceptance, resolution of grief, when the bereaved can think of the deceased without pain or anger and can recall the times they had together in a positive way.
These stages may merge together, and not everyone will experience all of them. Your autistic family member, or the person you are supporting, may experience confusion over why they do not see the person any more, or anxiety about why members of the family seem to be acting differently.
You could use a social story to explain how people become upset and cry when someone has died, and perhaps that it is okay that they have/have not cried.
Obsession with death
Many autistic people have obsessions. Your autistic family member, or the person you support, may become interested in or obsessed with death.
Read more about obsessions, repetitive behaviour and routines.
Remembering the person who has died
When it is appropriate, you might also consider making a 'Memory Book' (Allison 2001). This could be a book or box which is used as a record and reminder of the individual or pet who has died and the role they had in the person’s life.
It could also be used more generally to highlight other significant moments, such as family holidays, birthday celebrations or changing schools. This could help to put the death in a more general context of life progression, as they can see previous homes, pets and friends which they no longer encounter.
The Memory Book or box is something which they can add to throughout their lives. It can also be a valuable resource for any person or professional who becomes a part of the autistic person’s life, as they would instantly be able to see what and who is important to this person.
NAS Book of Remembrance
Our Book of Remembrance is a special place for NAS supporters to keep cherished memories of loved ones who have passed away.
Books and resources
Am I going to die?, Books beyond words
Breaking bad news
Death in the family: helping children to cope, Royal College of Psychiatrists factsheet
Finding your own way to grieve: a creative activity workbook for kids and teens on the autism spectrum, Karla Helbert, 2012.
Memory garden card deck
Support for the bereaved and the dying. A guide for managers and staff in services for adults on the autism spectrum, Helen Green Allison, 2001 (fully revised 2014)
Understanding death and illness and what they teach about life: an interactive guide for individuals with autism or Asperger's and their loved ones, Catherine Faherty, 2008.
When dad died, Books beyond words
When mum died, Books beyond words
When somebody dies, Books beyond words
Child Bereavement UK
Child Death Helpline
Cruse Bereavement Care
Last reviewed 27 June 2016