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Supporting Bereaved Autistic Children and Young People

Any child who has been bereaved needs the opportunity for their grief to be recognised and to be allowed to express how they are feeling.

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

Autistic children and young people 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 and overwhelmed and their autistic traits may increase.

Ways in which an autistic child or young person may react:

  • Carry on doing what they are doing or with the plans they have made to do something
  • Have a sudden release of emotions – grief explodes outwards
  • Shut down completely
  • Be hypersensitive
  • Avoidance

The child or young person may well be experiencing emotions very intensely even if it is not apparent. A lack of response doesn’t mean they don’t care.

Be aware when supporting a child with ASD in their loss around the expectations on them and their age and stage of development. Not every child with ASD is the same therefore their response may be different.

Developing an understanding of death

Autistic young people 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 when someone they love has died, whether that is a pet or a person.

The importance of talking about life and death in your setting or school 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.

What can help:

  • Use language that is unambiguous and clear, such as ‘death’, ‘dying’ ‘died.’ Explain what dead means in physical terms: ‘She is not breathing, her heart has stopped.’ 'The body does not work anymore. They can’t feel, hear, see or smell.' Visuals may help like pictures of dead flowers or animals.
  • Consider the amount of detail you give that is appropriate for that individual child or young person. Some children may want to have as much information as possible about the death. A child who was talking about dinosaurs in great detail when they were 4 will not be satisfied with a very brief explanation.
  • If a family is expecting a death due to an illness, it is best to prepare the child or young person for the physical changes they may see, feel, hear in the person before they visit them, using photographs and real objects. Explaining that there may be noisy equipment in the room is also important. Think about the child’s physical needs (ear defenders).

Identifying emotions

Autistic children and young people may not recognise separate emotions involved with bereavement such as shock, 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

Support to identify emotions before considering how to help them work through them is crucial.

You will probably already do work on emotions with the children/young people on the autistic spectrum and so extending their understanding of the range of emotions they may feel using emotions cards and other resources will be so helpful.

Helping them to notice how their body feels is essential to developing this understanding and to being able to label that emotion.

You can make a chart with individual children using photos and other visuals so they begin associate how they respond with the emotion they feel and the associated word to describe it:

 Emotion 

 How it makes me feel 

 What do I do?  

Anger

Tense

Throw things

Preparing for mourning and the funeral

Autistic young people find it challenging to understand hypothetical events and so preparation for the rituals associated with grieving is crucial.

  • Help the child or young person to begin to develop an understanding of the funeral by using books and other visuals –photos of the venue and of the people who may attend.
  • Talk about what they might hear, see, touch in the venue.
  • Explain that people may talk about the dead person (their mum/dad/brother) in a way that they don’t understand especially when that hasn’t been their experience of that person e.g. saying how smiley the person was when the child or young person didn’t seem them doing that.
  • Discuss how people may want to talk with the child or young person at the funeral and how they might feel if that happens.
  • Plan with the child a go to person should they feel overwhelmed.
  • Identify what they could do if they feel they need support or feel overwhelmed such as find a quiet place - and what might help them with the funeral generally – have a job giving out things.
  • Always check with the child if they want to attend and take your lead from them.

Processing the emotions

This section talks about ways in which you can support a bereaved child and young person following the initial work on identifying emotions.

We know that processing emotions can be challenging for children and young people with autism. They can lose actual abilities related to executive functioning such as organizing themselves to get washed and dressed (actions that involve sequencing)

Focusing on routines and sequencing will therefore be helpful for a child or young person in this situation. They will find the changes to their world that a death brings quite disturbing as well as grieving for the person who has died – their daily routines/experiences will be affected. Reassurance is also crucial. This reinforces a sense of safety and security for the child.

Opportunities to do lots of creative things which are relaxed and allow the child or young person to become engrossed and immersed can also be very supportive as well as enabling them to express their emotions. Likewise sensory strategies to help them feel grounded and promote a sense of calm.

Lots of quiet times including during the above may also be supportive and allow the person to feel calmer.

Continuing to support the child or young person to express their emotions verbally as appropriate, may also be helpful. By developing a vocabulary of grief, they will be learning to self-regulate.

Social stories are another very useful tool to support autistic children and young people’s understanding of emotions and feelings associated with bereavement.

Creating the opportunity to remember and celebrate the person who has died may be really welcomed by the child or young person.

This could entail:

  • Creating a sensory memory box with physical reminders of the person: a piece of material associated with that person, a photo, a cd with music on it.
  • Eating food or singing a song that the person loved.
  • Taking your lead from the child and give them the freedom to remember the person in their own way. (going to the grave, photos, drawing painting etc)

Resources:

References:

Link to useful worksheets: https://www.therapistaid.com/therapy-worksheets/grief/none

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