Skip to content

Supporting Bereaved Children and Young People with SEND

N.B. This article has a particular emphasis on Autism.

Any child or young person (CYP) who has been bereaved needs the opportunity for their grief to be recognised and to be allowed to express how they are feeling. They need understanding, love and support at times of loss and grief.

There is sometimes a feeling that CYP with SEND, especially more complex needs, must be protected as they are already dealing with so much. However, when we hear the voices of CYP who have been bereaved, they tell us that they want and need to know what has happened, how it happened, and be supported to understand and begin to come to and terms with it.

Parent/carers may find it challenging to know how to support their CYP at times of bereavement, as do professionals working with them because…

‘Their needs appear so overwhelming that caring families and professionals can themselves feel disabled.’

Judy Sanderson, Interventions with bereaved children, 1998

Some CYP with very complex needs may be more familiar with death than many other people because of the specialist provision they have attended, and the people they have got to know there.

SEND of course, covers a wide range of special education needs and disabilities, and some individuals will have difficulties in more than one of the four main areas:

        • Cognition and Learning Needs
        • Communication and Interaction Needs
        • Social, Emotional and Mental Health Needs
        • Sensory and/or Physical Needs

The level of needs will also vary from mild through to profound. The bereavement support will need to be tailored to the unique needs of the CYP you work with.

For those CYP who have learning disabilities one of the most important things to do is to keep the functioning age in mind, rather than the chronological one. There will be some CYP who have a spikey profile - they may be functioning more highly in some areas than in others.

Supporting bereaved children and young people with autism

For autistic CYP, additional support and understanding will often be needed from teachers and learning support assistants. This support should be discussed wherever possible with the child’s family so that whatever you do complements what they do.

Autistic CYP may not respond as other people do to a death; they may struggle to know how to react to the news that someone close to them has died; they may be flooded with emotions, feel overwhelmed, and their autistic traits may increase.

Ways in which an autistic CYP may react:

        • Carry on doing what they are doing, or continue with any plans they previously made
        • Have a sudden release of emotions - their grief may explode outwards
        • Shut down completely
        • Be hypersensitive
        • Display avoidance

The CYP may well be experiencing emotions very intensely, even if it is not apparent. A lack of a response does not mean they don’t care.

Be aware that not every autistic child is the same, therefore their response may be different. Consider the individual CYP, the expectations placed on them, as well as their age and/or stage of development.

Developing an understanding of death

Many CYP with cognition and learning needs will need additional support in this area. Autistic CYP tell us that it has taken them time, often years, to understand what death means in emotional terms. They may have heard of people dying, and developed an intellectual understanding of death, but it has only begun to impact them when someone they love has died, whether that is a pet or a person.

The importance of talking about life and death in your school/setting, as part of your curriculum, is so important for that reason. Developing children’s understanding of the life cycle of humans, other animals, and plants, will support and consolidate their understanding over time.

It is important to work closely with the CYP’s family as much as possible in this so that there is a coherent approach for them. Liaising with any other agencies working with the CYP is also recommended.

What can help:

        • Use language that is unambiguous and clear, such as ‘death,’ ‘dying,’ or ‘died.’ Explain what dead means in physical terms: ‘She is not breathing; her heart has stopped.’ ‘The body does not work anymore. They cannot feel, hear, see, or smell.’ Visuals (drawings or pictures) may help, such as the life cycle and death of plants or animals.

        • Consider the amount of detail you give that is appropriate for that individual CYP. Ask them to tell you what they understand about what has happened and give information gradually. Some CYP may want to have as much information as possible about the death.

        • Use visual cards and social stories to explore what happened in a sequence or act out what has happened using toys/models/puppets. Go back over these activities frequently to reinforce understanding.

        • If a family is expecting a death due to an illness, it is best to prepare the CYP for the physical changes they may see, feel, or hear in the person before they visit them; use photographs and real objects. Think about the environment for the CYP; it may be necessary to explain that there may be noisy equipment in the room etc. Think about the child’s physical needs (ear defenders).

        • At all stages, watch how the CYP responds, and follow their lead.

Identifying and expressing emotions

CYP with learning needs may need a lot of support to recognize the emotions associated with bereavement. Reassure the CYP that they are likely to experience strong emotions when someone they love dies and that this is natural. It is important to support them to express their feelings safely.

'… pupils with learning difficulties may lack the communication skills that allow them to express their feelings or ask questions in the same way that children without additional needs are able to.' (Crane 2005)

'Without communication structures you are more likely to behave the way you feel.' (Hewitt 1998)

Loss-and-complex-needs-leaflet - Penhaligons Friends

Autistic CYP may not recognise separate emotions involved with bereavement such as shock, worry, or anger - they may just feel overwhelmed. Some autistic CYP may have alexithymia, which means they struggle to identify and recognise emotions.

‘They sometimes report feeling strongly about something when their bodies are in a state of relative calm and at other times, they may report feeling calm when, in fact, their body is in a state of high alert.’

Sebastian Gaigg, Senior Lecturer at City University

It is crucial to support the CYP to identify their emotions, before then considering how to help them work through the emotion. You may already be supporting the CYP to expand their understanding of the range of emotions - using emotions cards and other visual resources can aid with this. Helping them to notice how their body feels is essential to developing this understanding and to being able to label the emotion. You could use the ‘My emotions and my body’ worksheet to explore emotions and sensations in the body.

You could make a chart with individual children like the one below. Add photos or drawings to the chart, as this will aid them to associate sensations and responses with the emotion, as well as naming the emotion.

Preparing for mourning and the funeral

CYP might have no awareness of the rituals associated with mourning and funerals and so preparation is vital. Autistic CYP can find it particularly challenging to understand hypothetical events and might require more support to prepare.

        • Always check with the CYP if they want to attend the funeral and discuss this with the family, take your lead from them.

        • Help the CYP to begin to develop an understanding of the funeral by using books and/or other visuals (photos of the venue and of the people who may attend).

        • Talk about what they might hear, see, or experience at the venue.

        • Explain that people may talk about the dead person (their nan/dad/aunt/brother) in a way that they do not understand, especially when that has not been their experience of that person e.g. saying how ‘hard working’ the person was when the CYP did not see them at work.

        • Communicate to the CYP that people may wish to talk to them at the funeral and discuss how this might make them feel.

        • Plan with the CYP a ‘go to’ person should they feel overwhelmed.

        • Identify what they could do if they need support or feel overwhelmed, such as find a quiet place and then talk to their ‘go to’ person. Discuss what would help them in general when they are at the funeral - e.g. having a job to do, such as giving out things.

Processing the emotions

We know that processing the emotions related to grief can be challenging for all CYP, however this might be more so for CYP with SEND.

Alongside grieving for the person who has died, the CYP’s daily routines/experiences will be affected. They may find the changes to their world incredibly challenging. Autistic CYP could lose skills related to executive functioning, such as organizing themselves to get washed and dressed (actions that involve sequencing). Focusing on routines will therefore be helpful for a CYP in this situation. Reassurance is also crucial as it reinforces a sense of safety and security for the child.

Opportunities to do creative things can be beneficial as it may allow the CYP to become engrossed and immersed in a positive activity, as well as enable them to express themselves. Likewise, using sensory-based strategies can help them feel grounded and promote a sense of calm - you could use BEC’s ‘My Grief Care Kit’ to help build a sensory kit.

Ensuring there is quiet time to be still with little sensory input may also be supportive and allow the CYP to feel calmer.

Continue to support the CYP to recognise and express their emotions using their preferred form of communication. By developing a vocabulary of grief, they will be learning to self-regulate.

Social stories are another useful tool to support their understanding of emotions and the feelings associated with bereavement.

Making lasting memories

'SEND C&YP will often need additional help to place the memory in context and to have associated sensory memories validated not just cognitive ones. Smells, colours and sounds can all strengthen the memory trace and aid subsequent recall.'

Impact of SEND on C&YP’s grief, Talk to Stars

Creating the opportunity to remember and celebrate the person who has died may be really welcomed by the CYP - you could use BEC’s ‘Coping on difficult days’ to help with ideas. The CYP may not want to revisit memories that are unpleasant or not good, such as the physical changes to their loved one before they died. Take your lead from the child and give them the freedom to remember the person in their own way.

This could entail:

        • Creating a multi-sensory memory box with physical reminders of the person: a piece of material associated with that person, a photo, a playlist of music (‘My Grief Care Kit’).

        • Eating food or singing a song that the person loved.

        • Watching a film/recording of the person who has died may also help the CYP express their emotions.

        • Being creative by making something for the person who died - drawing or painting etc.

        • Visiting the grave or another special place that reminds them of the person who died.

        • Placing 3 small stones of differing colours and textures in a bag, each represent a different type of memory (ensure there is appropriate support from a worker who can give simple explanations/prompts and to offer space for the CYP to talk about the memories):
              • A smooth and average stone to represent the everyday memories of the person who died, i.e. morning or bedtime routines, going food shopping together, etc.
              • A rough or darker stone to represent any difficult or upsetting memories.
              • A special or shiny stone to represent the special memories, i.e. birthdays, Christmas, or special celebrations.

You may want to seek advice if you notice that the CYP is struggling to understand and/or is continuing to display distressed behaviour in response to the bereavement.

References:

Resources:

Reviewed: July 2024

Search

Search form

We use cookies to give you the best experience of using this website. By continuing to use this site, you accept our use of cookies. Please read our Cookie Policy for more information.