This section covers the difficult issue of helping a child with autism to cope with the death of someone known to them.
Death and bereavement are subjects that can be difficult to discuss. This natural reluctance means that we avoid discussing death until it is too late, especially with someone who has an autism spectrum disorder (ASD).
Individuals on the autism spectrum require clarity and planning about any event they might experience in their life. Much of the information that has been written about supporting people with ASD through experiences of death and bereavement are aimed at adults living in services but the Autism Helpline is often asked how to explain death to a child with an ASD. We hope that this information sheet will provide useful guidance for dealing with this delicate area. Clearly every child is different, and their level of understanding will differ too. Therefore you may have to make some adjustments for your individual child. The word 'child' will be used throughout but the information provided will be applicable to many adults as well.
As with most life experiences, a child with an ASD will understand and adjust better if they are involved in the situation and prepared for dealing with it as much as possible. If someone in the family is ill, it is better to explain what is occurring and why Grandma, for example, keeps going to the doctors or spending time in hospital. This is because unexplained occasions and the unknown often scare people with ASD, producing anxiety and challenging behaviour. As a family you will need to decide how much detail will be appropriate, but do remember to explain any possible change in the person's appearance.
It is only natural to be concerned that you will make your child anxious by telling them about an illness. That worry is understandable in such a situation but you may nevertheless upset and confuse the child by not telling them. They may become aware that the routines and atmosphere of the household have changed, and display challenging behaviour because of this. By providing your child with an explanation, and changing as little as possible, that anxiety will be kept to a minimum.
It may help your child to understand the progression of the person's illness by charting on a timeline or calendar the various appointments that the person will attend, including any prolonged stays in hospital. Alongside these, you can also position any significant dates for the child; for example, their birthday, school play or first day at college. You could also add any routine changes, such as who will pick them up from school. This is particularly important if that role is normally fulfilled by the family member who is ill. This will help the child with ASD to see the situation in a more general context within their life. Also, as change is difficult for any person with an ASD, this will remind your child about those things in their life which will remain the same, such as attending school every day.
If the person's illness becomes more serious, you may feel that you need to prepare the child for this individual's possible death. Your explanation of what death is will be determined by your own beliefs and values. However, Allison (2001) suggests explaining death within a life cycle, possibly using insects, plants or animals to demonstrate this. This biological approach is practical, clear, and could be presented visually. Many individuals on the autism spectrum respond well to visual descriptions (see 'Visual Supports' information sheet, www.autism.org.uk/24388 ).
In one case, a school took this principle a stage further in order to explain death to a five year old child with an ASD whose father had terminal cancer. They got a dead chicken from a local farm and named it Charlie. Charlie was shown to the child, who commented that Charlie not moving (Ulliana 1998). They explained that Charlie would not move again as he had died. They then put Charlie in a box, which they referred to as a coffin, and buried him with a cross placed above the grave (presumably this reflected the familys own beliefs). They photographed this process and compiled these into a book which they entitled 'Brett says Goodbye to Charlie Chicken' (Ulliana 1998). This method was then used with the Brett's father, as they photographed Brett with him, in hospital, before his death and took pictures of his empty bed after he had died. Again, these photographs were placed in a book called 'Brett says Goodbye to Daddy' (Ulliana 1998). This book was then used to talk regularly to Brett about his father in the weeks and months after his death. Although this preparation might seem morbid, the school clearly appreciated this child's need for visual supports in order for him to understand death, and where his father had gone.
Remember to be careful about the language you use, especially if your child is literal in their understanding and interpretation. For example, if you describe death as "like going to sleep" you may make the individual terrified of going to sleep at night. Something simple such as "sometimes people's bodies become worn out" 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".
You will also need to explain any religious practices that your family observe at the time of death. This might include visiting in advance the place where any ceremony will be performed, speaking to the person leading the observance, and introducing the child to any other unknown practice. It may be a good idea to ask an appropriate relative to care for the individual during the funeral. This will help to ease the pressure on the immediate family and will also provide a reliable person for your child during this difficult occasion. (The Autism Helpline has information on going to a place of worship, www.autism.org.uk/20594 ).
There is a series of books available called 'Books Beyond Words' (See the 'Recommended Reading' section below) which explains burial, cremation and bereavement counselling. These books are not specifically written for people with ASD, but they use only pictures and are therefore ideal for use with individuals who have autism.
Whether your family has specific religious beliefs or not, it may help to establish a particular ritual within the family when someone dies, whether this is a pet, family member, friend or even a personality on TV whom the child liked. This will give your child a particular routine to follow and will hopefully lessen any inappropriate responses to the announcement of a death, which may cause further distress to other members of the family. This ritual might involve the simple lighting of a candle, while everyone thinks about the person or animal who is being remembered. By "preparing people with autism for the losses which can occur they may become more able to cope with major bereavements." (Allison 2001)
A sudden death may cause more extreme forms of upset and confusion. But this reaction is natural and will probably be experienced by everyone within the family. When explaining why that person died, you may need to reassure the child with an ASD that this will not happen to them. You may like to set a boundary on age, for example: 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, please think very carefully about the likelihood of your child experiencing a younger person's death.
It is difficult to predict anyones reaction to the death of someone close to them, and individuals on the autism spectrum will be no different. Each person's reaction will be unique to them. You may not recognise the person with ASD's displays of grief, but any difference in their behaviour may be an expression of their confusion and loss. Howlin (2004) describes how the "person with autism may seem apparently unconcerned, even by the death of someone very close,... [they may focus on] seemingly callous issues, such as how much they may have been left in the will." She then outlines one particular adult's reaction to her fathers death, describing how she "began to embark on bizarre monologues about punishment and pain, murder and the police", (Howlin 2004) though her father's death had not involved the police in any way. These behavioural changes may not coincide with the death of a relative or friend, but may occur perhaps three months, six months, or a year afterwards. This will need to be recognised so these behaviours are appropriately understood and supported. (See information on behaviour: www.autism.org.uk/behaviour ). You may notice a reoccurrence of these or other behaviours at significant dates after the persons death; for example, at an anniversary, Christmas or birthdays.
There are recognised approximate stages of bereavement (Allison 2001):
- Shock, numbness, denial
- Despair, turmoil and acute grieving, including:
- anxiety, fear, panic
- pain, appetite disturbance, breathlessness, illness
- more than usual need for sleep, sleeplessness, hyperactivity
- regression, loss of skills
- Recovery, including
- 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.
Please be aware of these stages: they may merge together, and not everyone will experience all of them. Your child may have all of these feelings, and others too. For example, they 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 may like to 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 (see our Social Stories™ and Comic Strip Conversations information www.autism.org.uk/16261).
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; it could also be used more generally to highlight significant moments in your child's life. They might choose mementos which show "...happy incidents in their lives, family holidays, previous homes, photographs of family members and pets..." (Allison 2001). This record can then be used to demonstrate the role that the deceased individual had in the life to the child with an ASD. This role will also be seen in a more general context of life progression, as the child 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 individual's life, as they would instantly be able to see what and who is important to this person.
The Autism Helpline is sometimes asked by parents about their child's obsession with death. Obsessions are common with individuals on the autism spectrum. If your child has become interested or obsessed with death you may like to read the information sheet on Obsessions, Rituals and Routines (www.autism.org.uk/18352).
In Summary, when dealing with death and bereavement:
- prepare your child as much as possible
- keep routine changes to a minimum
- use clear, simple language
- use visual supports where appropriate
- show understanding for unfamiliar displays of grief, such as challenging or obsessive behaviour or an increased reliance on routines. Any reactions may be delayed.
If you would like any of the Information Sheets mentioned in this article (Visual Supports; Going to a place of worship; Understanding Behaviour; Social Stories and Comic Strip Conversations; Obsessions, Rituals and Routines) please contact the Autism Helpline using the contact details at the end of this article.
NAS Book of Remembrance
The NAS has set up an online book of remembrance where NAS supporters can create a page to remember loved ones who have died. You can see the book of remembrance and create pages and posts here: www.theonlinebookcompany.com/nasbook
The Autism Helpline has a small list of counsellors who have an understanding of autism spectrum disorders. A number of these can provide bereavement counselling. If you are interested in this, or any form of counselling, please contact the Autism Helpline using the details at the end of this article.
Breaking Bad News
A website (with accompanying book) with guidelines, case studies, and practical tips, for social care and health staff, families and carers, on breaking bad news to people with learning disabilities and or autism. http://www.breakingbadnews.org/
Cruse Bereavement Care
Able to talk about any form of bereavement (not autism or disability specific).
Helpline telephone: 0844 477 9400
Helpline email: firstname.lastname@example.org
Website designed by young people for young people (not autism or disability specific). It is a part of Cruse Bereavement Cares Youth Involvement Project. Private messages can be sent to trained volunteers through the website, or you can speak to them direct through the free Helpline: 0808 808 1677 (Monday to Friday 9:30am to 5pm)
Well known for counselling in the area of sexual abuse, they are also able to counsel adults with learning difficulties who are bereaved.
Telephone: 020 7383 0700.
(there is a business section to this website and a section for those with learning difficulties)
The Child Death Helpline
A telephone service for anyone affected by the death of a child. This is not a counselling service but callers can speak to a parent who has experienced bereavement. (Not autism or disability specific)
Helpline: 0800 282 986 / 0808 800 6019 (mobile freephone) (open 365 days a year, every evening 7:00-10:00pm, Monday to Friday mornings 10:00am-1:00pm, and Tuesday and Wednesday afternoons 1:00pm-4:00pm). Email: email@example.com
The Compassionate Friends
Organisation of bereaved parents and their families who provide support for others like them. They also have local contacts who provide face to face support. (Not autism or disability specific)
Helpline: 08451 23 23 04 (open daily, 10am-4pm and 7-10pm)
Winslow Education and Special Needs
Catalogue of resources for people with special educational needs. These include products which could be used to support a bereaved person; for example, 'Memory Garden', an illustrated card deck which shows the cycle of life using a flower and can be used to provoke discussion, or 'The good mourning game' where players can explore memories and feelings around any sort of loss.
Order line: 0845 230 2777
Winstons Wish, for grieving children and their families
Provides support for bereaved children and young people up to the age of 18 years. Also supports their parents, carers and professionals. They provide group and individual work with children at their centre in Gloucestershire. Not disability specific but they have helped children with autism spectrum disorders in the past.
Helpline: 0845 20 30 40 5 (for those supporting a bereaved child)
General Enquiries: 01242 515
www.winstonswish.org.uk (this website has a section for young people too)
References / Recommended Reading
Allison, H.G. (2001). Support for the bereaved and the dying in services for adults with autistic spectrum disorders. London: The National Autistic Society
Faherty, C. (2008) Understanding death and illness and what they teach about life: an interactive guide for individuals with autism or Asperger's and their loved ones. Arlington, Texas: Future Horizons
Helbert, K. (2013) Finding your own way to grieve: a creative activity workbook for kids and teens on the autism spectrum. London: Jessica Kingsley Publishers
Hollins, S., Blackman, N. and Dowling, S. (2003) When somebody dies. London: Books Beyond Words. www.booksbeyondwords.co.uk/books
Hollins, S., Sireling, L. and Webb, B. (2004) When mum died. London: Books Beyond Words. www.booksbeyondwords.co.uk/books
Hollins, S., Sireling, L. and Webb, B. (2004) When dad died. London: Books Beyond Words. www.booksbeyondwords.co.uk/books
Howlin, P. (2004) Autism and Asperger syndrome: preparing for adulthood. 2nd edition. London: Routledge
Royal College of Psychiatrists. (2012) Death in the family: helping children to cope. Factsheet available at www.rcpsych.ac.uk/expertadvice/youthinfo/parentscarers/parenting/deathinthefamily.aspx (not autism or disability specific, but does advise about how children might respond to death and how they can be supported)
Ulliana, L. (1998). Bereavement and children with autistic spectrum Ddsorder. Keynotes Newsletter, June 1998. Autistic Association of NSW (Australia)
The words Social Story and Social Stories are trademarks originated and owned by Carol Gray. All rights reserved.
Last updated: March 2013
If you require further information, please contact:
Tel: 0808 800 4104 (open 10am-4pm, Monday-Friday)
Minicom: 0845 070 4003
Our Autism Helpline provides impartial, confidential information, advice and support for people with autism spectrum disorders and their families and carers.
Tel: 020 7903 3599 (open 10am-1pm, Monday-Friday)
Fax: +44 (0)20 7833 9666
Our Information Centre provides a specialist information service for professionals working with people with autism and their families, and students and researchers studying autism.