Just like any other child, an autistic child will need their grief to be recognised and understood and to be given opportunities to express how they feel. Every autistic child is different and as with any child, how you support them will be informed by your understanding of their needs. 

Common aspects of autism such as taking things literally, difficulty expressing feelings, disliking changes to routines, and difficulty sensing and interpreting people’s feelings, can mean that some autistic children may not respond to the death of someone close to them in the same way as neurotypical children. However, this doesn’t mean they’re not grieving.

There are many stereotypes as to what an autistic person ‘looks like’, ‘acts like’ ‘understands’, and ‘feels’. All children are individuals – all children with autism are individuals. Therefore, we cannot provide one scenario of what a bereaved child will “look like’ or one way we should help them when they are grieving, the same applies to a bereaved autistic child. 

This information covers a range of things to consider when supporting a bereaved autistic child, and suggestions for what might help.

How might autism affect a child or young person?

Due to differences in how they process information and understand abstract concepts, autistic children may have specific challenges in terms of how they respond to a death and the rituals that surround it. Other difficulties they face may relate to:

Mindblindness

An autistic child may find it more difficult to see things from another’s point of view. This may make it hard for them to understand other people’s feelings and behaviours, including not realising that others can help.

Information processing

An autistic child may have difficulties in understanding the implications of a death. For instance, the child may not understand that because someone has died, this means they will not be able to take them to school, play with them at the weekend, or to celebrate their birthday with them.

Language and communication

An autistic child may find it difficult to understand abstract concepts and, as with any bereaved child, it can help to use clear, specific, concrete language, avoiding phrases such as 'gone away' or 'lost', which can be confusing. Autistic children may also find it difficult to let you know how they are feeling and to ask for support. 

Preoccupations or special interests

An autistic child's focus on specific things, such as reciting lines from favourite cartoons, spinning small objects, playing with water etc, may increase in intensity following a bereavement or they may develop new preoccupations.

Need for routine

Autistic children tend to dislike changes to their routines, and a death in the family will typically result in many changes occurring. This can lead to the child’s anxiety levels rising. To help lower their anxieties, keep explaining (using the child’s preferred mode of communication) what has happened and that the death is not their fault.

Imagination, time perception and memory

These may lead to difficulty in understanding the impact of a death. When someone dies, autistic children can be further distressed by any changes that might happen in their day-to-day lives as a result of the bereavement, for example, understanding changes to routines, anticipating how things might be in the future and understanding events that they have not experienced before.

How can I tell my autistic child that someone has died or is dying?

When telling your child that someone has died or is dying, use clear, precise language and avoid abstract ideas or euphemisms. You may find visual aids such as social stories, YouTube videos, cartoons or films can help to explain things. 

You might say: 

"I have some very sad news to tell you. Granny has died. You know that she has been in hospital. But sadly, the doctors weren’t able to make her better and she has died."

View our resource on explaining to a child that someone has died for further guidance.

How can I explain to my autistic child what death means? 

When someone dies, an autistic child may need help in understanding what death means and that it is permanent.  For instance, they might think they will be able to continue visiting the person who has died. Gently explain that they won’t be able to see the person anymore but that you can enjoy looking at photos or footage of them together, if you have any.

Use simple, concrete language and avoid euphemisms such as ‘lost’, ‘passed away’ or ‘gone to sleep’. You may need to explain what dead means in concrete terms. You might say:

‘When someone is dead their body is no longer working and their heart has stopped. A dead body cannot move or feel anything, so there is no pain.’

Use lots of examples to demonstrate that death is permanent and not reversible in a way that is appropriate to the child’s understanding, and your family's faith if you have one. 

Where possible, use pictures and real objects. Try to use concrete biological examples that are clear and visual, such as comparing dead flowers with live flowers or talking about what ‘dead’ means if you come across a dead bird or insect, for example.

It can be helpful to develop rituals to mark a death, such as lighting a candle, when a pet dies. The same ritual can then be used when a person dies.

Answer the child’s questions as they arise - this 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 lots of extra detail which can be confusing.

View our resource for more guidance on explaining to a child that someone has died.

How will my autistic child be affected by the death of someone they know?

You may be unsure as to how much the child is affected by a person dying. Think about how the child behaves on a typical day and then assess how far they are deviating from their ‘norm.’ Most people who receive bad news will behave a little differently, so we should not be overly concerned when an autistic child does this too. 

If the child’s reaction involves them becoming angrier and more physical, ensure that they are safe by removing dangerous objects, etc. Wait until this physical emotion has passed, and, if this is something they use, talk to the child using AAC (augmentative and alternative communication). Talk about the person who has died and how it is affecting the child.

Children with autism who are non-verbal need time and space to grieve like any other child, and to find ways to connect with the memory of the person who has died. This may be through sensory interaction with objects or clothes that belonged to them, music, photos or smells, at a time and place where they feel safe and supported by someone they know well. 

How might my bereaved autistic child's behaviour change?

A bereaved autistic child may become more impulsive in their behaviour and reactions. Such changes might indicate that they require an even greater level of support to help understand what has happened and why their life has changed in certain ways.

It is normal for all children to find the grief of other people overwhelming, but some autistic children can find seeing other people crying or expressing heightened emotions particularly tough. If part of your child’s autistic profile is social communication difficulties, you may notice that they shut down when other people are upset or physically remove themselves from conversations when they become emotional. Allow your  child to have space when they need it, while being clear that it is okay for people to cry and show their feelings.

Preparing your autistic child when someone is not expected to live

If someone’s death is expected, it may be possible to gradually prepare your child. If you are visiting the person in a hospice or hospital, explain in advance to your child 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. You may also need to explain if there will be medical equipment such as intravenous lines or a ventilator, and that it might be noisy.

As far as is possible, try to keep to normal daily routines and explain any likely changes in routine in advance, giving details about who will be doing what and when. Use clear, concrete language, avoiding euphemisms and abstract ideas and use pictures and photographs to explain what will happen, 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.

Calendars or other visual aids can also be useful, for example to mark upcoming hospital visits alongside positive events such as visits to the park, a birthday, or their regular activities.

Encourage your child to take their comfort blanket, favourite soft toy, music and headphones, or another item that will help them regulate if they start to feel overwhelmed.  

How can I prepare my child for a funeral or other ritual?

It can help to prepare your child for ceremonies or rituals that will include them, by visiting the place where it will take place beforehand, if this is possible. It may help to use photographs and to draw up an explanatory story using words and pictures to explain what will happen. Explain what your child is expected to do and show what other people might be doing and saying, and what will be happening around them. 

Your autistic child may ask very direct questions, such as ‘What happens to a body when it’s buried?’ or ‘Does it hurt if the person is cremated?’. Adults may find it difficult or even inappropriate to discuss these kinds of details but it is very important to provide simple, factual answers; if your child is asking the question it is because they need to and are ready to hear an answer. 

Giving clear, easy to understand explanations will help your child feel regulated and safe; ambiguous answers can cause confusion, and not having a clear answer may result in your child making up their own answers to fill in the gaps in their understanding. 

You may find it helpful to watch our short animations on what happens at a burial and what happens at a cremation with your child.

How can I answer difficult questions my bereaved autistic child may ask?

You may be asked some difficult questions or some that you do not see as important. For example, ‘What temperature is the fire at the crematorium?’ To an unprepared person this could be a very upsetting question. Remember, for the child, this question equals a concern. An unanswered question or concern will lead to anxiety and distress.

If you do not know the answer to the question, tell the child you will find out for them and then do so as quickly as possible. If the child has numerous ‘tough questions’ that are all being directed to one person (who is finding it upsetting), find someone who is comfortable answering such queries and ensure the child knows they can go to them with these questions.

How can I help my child to recognise their feelings?

Like any child, an autistic child needs to be given opportunities to express how they feel. Help your child to learn how to recognise 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) and by using consistent and simple language to label emotions from your child’s own experiences. Be prepared that your child may not react to the death at the time. It could be weeks or months before they are able to process the loss and how .it affects them.

Using pictures is particularly helpful for autistic children, and a ‘feelings thermometer’ can help a child express the intensity of an emotion. You can create one by drawing a picture of a thermometer with a rating scale up the side. Encourage your 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. You may find it helpful to watch our short animated film Volcano together. 

An emotion wheel can be a useful tool to help an autistic child identify and express emotions and how these feel in their body.  Using a ‘comic strip conversations’ technique can help others to understand what an autistic child 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. 

How can social stories help my autistic child to understand death and dying?

Many autistic children benefit from the use of social stories or comic strip conversations. These help them understand new information or situations.

A social story is a short description of an event or situation. The text is often supported with pictures, photos and/or symbols. A comic strip conversation is made up of simple drawings and stick figures, which accompany the information. Colour can be added to the words in the comic strip to help represent the emotional content of the statements.

An autistic child may struggle  with changes to routine, for example, if they no longer go to their person’s house after school, have to move house, or don’t have a car any more. These changes to their routine may be incredibly unsettling and show up in dysregulated behaviour. Using social stories to prepare for change or a new routine may help children cope with new transitions and practical changes that can come with a bereavement.

How can I help my autistic child to remember someone who has died?

When someone important to a child or young person dies, memories are an important part of their grieving. 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 sibling, 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.

Autistic children often form strong attachments to objects. If they’ve always loved something such as an ornament or a toy that was owned by someone special to them who has died, it can be nice to gift this to them, if this is possible, as a way to help them remember. A piece of material from an item of clothing worn by the person who has died can be comforting carried in a pocket or made into a cushion. Similarly, smelling the favourite perfume or aftershave of the person on a piece of fabric or hanky can be reassuring. 

Putting together a memory box of physical reminders can also be helpful and, if your child can help choose the items, it can help give some insight into factors and events that are key to the relationship with the person who has died. Try to include something relating to all five senses. It might include pictures of the person and of things that the person enjoyed, a small object that belonged to them, a piece of fabric that is associated with the person (that may have a particular ‘feel’ to it), a playlist of music that the person enjoyed or videos of them, and something that reminds the child of the smell of that person (such as perfume, aftershave or deodorant). Listening to audio of the special person’s voice if you have any, or their favourite music, can be familiar and comforting. Photographs can help to create a timeline to spark off memories of significant events, and then build a life story of the person. 

Our resource has suggestions for other creative activities that can help grieving children and young people to remember someone important to them who has died. 

Bear in mind that an autistic child may have a strong reaction to particular smells, sounds or images that connect them to the person who has died. Sometimes these can be positive associations, for example, touching the earth with their fingers may remind them of happy hours spent in the garden with Grandad. However, sometimes there can be negative associations - the beeping noise as they enter a shop or the sound of a text message on a phone may instantly take them back to the beeping machines when Grandad was in hospital, causing distress.  

An autistic child’s memories can feel much more immediate and tactile than a neurotypical child’s and do not fade easily. It can therefore be difficult for some autistic children to adjust after a bereavement. Emotional regulation can be trickier for an autistic child but with support they can learn coping skills and build resilience.  

Watch our short animated film Remembering someone special who has died for other ideas on remembering someone important to you who has died. 

With thanks to Aspens, a charity that provides care and support to people on the autistic spectrum and their families for their input into this resource.