Grief is a unique experience, and each person will experience this differently, no matter their age, location, cognitive ability or neurotype. Often, grief support focuses on word-based ways to work through grief, such as writing in a diary or talking to a loved one or professional who will listen. Whilst these are great tools for lots of people, some neurodivergent children and young people may experience grief in their bodies and brains differently from their neurotypical peers and may face challenges recognizing and communicating this. 

Most children will feel able to open up and engage with others when they feel safe. This safety is again, different for all children so use your knowledge of your child to create a safe environment for them. This can increase the likelihood of them sharing their more difficult thoughts and feelings surrounding their grief.  

Though this body-brain response to grief is common in neurodivergent children, all children are neurodiverse (as this word describes the wide diversity in all brains), and the death of a loved one can be traumatic for all children. Because of this, many of the ideas in this blog will offer practical help for all children and young people, whether diagnosed as neurodivergent, on a waiting list for assessment, or not.  

Safety and connection for neurodiverse children

Neurodivergent children benefit from understanding, acceptance, accommodations and adjustments that support their unique needs, especially after a bereavement. When this happens across all settings, e.g. home, school, college, and clubs, it can improve stability and predictability, ultimately creating an experience that feels safe for your child to explore their feelings of grief. This might include providing items they feel connected to such as toys, teddies, plants, animals or characters which can present a “safe” way for them to work through their grief.  

Grief is incredibly complex at the best of times and for many children, this may mean a change in their behaviour. Some children may experience attachment issues or regression; for neurodiverse children, these things can sometimes be intensified. It can therefore be helpful to:  

• Offer to stay with them to help them regulate their feelings and their bodies, but respecting their decision to be alone if that’s what they want  

• Encourage them to continue with activities/interests that they enjoy  

• Avoid situations that may increase their stress levels where possible  

• Provide a space to connect with friends, key adults or Winston’s Wish practitioners who are outside of your immediate family if they would like to 

 

Grieving as an adult whilst supporting a grieving child can be incredibly challenging; don’t be afraid to engage with professionals for support. Early help can offer a good platform for support, or you can talk with your child’s health visitor, school nurse, nursery, school or college.  

If you have any concerns about your child managing day-to-day tasks, speak to their GP for advice.  

Sensory processing differences

Neurodivergent children may have differences in how their brain receives, interprets and responds to sensory information. This means that, at any time, they may experience heightened or reduced sensitivity to input (such as noise, light, textures, smell, touch, and motion), which can affect how they move and interact. These responses may include:  

• An increase in fidgeting, chewing or stimming 

• Heightened response to the texture of clothing and increase in preferences 

• Altered responses to smell  

• An increase or decrease in activity level  

• An increase in impulsive behaviour   

 

To learn about some ways to help a child having difficulties with their sensory differences, read our blog about supporting a bereaved child who has autism. Speak to your GP or browse the NHS website to explore additional information about sensory differences.  

Bodily cues

Neurodivergent children, including those with ADHD, autism, hypermobility and many more conditions, often report interoceptive differences. This means they may have difficulty noticing body signals resulting in missing cues that inform their emotional or physical experience. This may cause changes such as: 

• Feeling the pain of grief physically in their bodies  

• Changes in eating habits, including overeating or reduced appetite 

• Regression in continence or other aspects of their independence  

• Changes in sleeping habits  

• Changes in their approach to hygiene, e.g. showering more, or resisting bathing  

Try to help the child connect the dots between what they are feeling inside and how to support themselves. Our activities for children can help with this.  

Emotional regulation and communication differences

Managing emotions can be particularly challenging for neurodivergent children who may experience intense distressed behaviours or difficulties in recognising, connecting with, and expressing their emotions. Following a bereavement, their window of tolerance may also change regularly as a result of:  

• Where they are  

• Who they are with  

• What time of day it is  

 

You may find that they show increased distressed behaviours, cry more or less than you anticipated, laugh at unusual times, experience mutism or other communication struggles, experience their feelings more intensely and even feel less confident. You can help them through this by: 

• Providing safe physical outlets for their emotions, such as beating a drum, stamping their feet, or kicking a ball  

• Follow their lead and listen to what they need to do in that moment, e.g. talking, writing or using familiar technologies such as laptops, mobiles and tablets 

• Providing opportunities for them to express themselves without words, for example by using playdough or drawing  

• Meeting them with compassion if they are unable to do their normal tasks  

• Offering extra help with their physical needs such as eating, sleeping, washing, exercising and resting, but still respecting their boundaries around these.  

 

Neurodivergent children can respond well to things that allow them to use their body and brain without talking, such as through music, pets, sound, art, movement, Lego, and sand trays. Here at Winston’s Wish, we can offer creative therapies to children who may find talking to a counsellor in the traditional sense more challenging. Discover more about creative therapy in this blog. 

Finally, neurodivergent children can be especially sensitive to the emotions of others. It is important for all family members to be able to express their own grief naturally, but it is good to have an awareness that this may impact a neurodivergent child in different ways. Explaining to all children that grief is individual, no two people will experience it in the same way, and however they experience it is okay, knowing this can help validate their feelings.  

How to get immediate grief support

If you need advice on supporting a bereaved child or young person, you can call the experienced Winston’s Wish team on 08088 020 021 (8am-8pm, weekdays), email us on ask@staging.winstonswish.org or use our live chat (8am-8pm, weekdays).

For out-of-hours mental health support, you can use Shout’s 24/7 messenger service by texting WW to 85258. For urgent support, please call 999.

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We All Grieve

Download our SEND bereavement activities

Social Stories

Winston’s Wish has launched a new SEND Rapid Response package designed to support educational providers following a bereavement in the school community. 

We have worked exclusively with Sarah Helton, a SEND Trainer and Consultant who specialises in grief and bereavement, to create this specific package designed with SEND pupils in mind. 

Sarah, also known as the BackPocketTeacher, has worked in the Special Educational Needs/Disabilities (SEND) field for more than 25 years and has an outstanding track record in a diverse range of roles from Deputy Head to Local Authority Education Officer as well as Educational Publisher. 

Rapid Response is a trailblazing package offered by Winston’s Wish to education settings to offer fast bereavement support when there has been a death in the school community. This special training session, delivered online, is designed to support teachers and school staff to be able to recognise signs of grief and to support pupils through the bereavement.  

The SEND Rapid Response one-day package covers such topics as how to communicate what has happened, how to offer support and understanding around complex feelings and explore the fears around the pupil’s own mortality or that of others, as well as offering help and acknowledging the wellbeing of the teachers who are supporting grieving pupils.  

All schools will experience bereavement, but for special schools it can sadly occur more frequently. A significant death within the school community can have a ripple effect, impacting students, staff and families, making it hard to balance their own grief whilst supporting the grief of others.  

In recognition of this Winston’s Wish is offering SEND Rapid Response Training aimed at supporting special schools helping them through the toughest of times and preparing them for future losses. This online training session will consider the particular needs that staff will face when helping young people to understand and express their grief whilst being mindful of staff wellbeing. We are very excited to launch this important training to complement our ongoing work in supporting bereaved young people with additional needs. 

 

Sarah Helton, BackPocketTeacher

Sarah went on to say, “The needs of children and young people with SEND are often overlooked due to their cognitive or communication differences. We know that a young baby can be affected by the death of a parent. If a baby has the capacity to experience this, then every child with SEND has at least this level of understanding and it is often much higher than we realise. 

“There are many perceived barriers to children and young people with SEND gaining bereavement and grief support, but in reality, the only true barrier is us. We need to have confidence to talk about death and grief to all young people.” 

Letizia Perna, Director of Services and Service Transformation at Winston’s Wish comments, “Sarah’s collaboration with Winston’s Wish elevates our ability to address the unique challenges faced by bereaved SEND children and young people. By integrating their perspectives more deeply, we’ll create even more nuanced, effective support systems that truly resonate with their experiences.  

“We’re passionately committed to amplifying the voices of SEND children and young people throughout our organization. The lived experiences, ideas, and feedback of all bereaved children and young people will continue to be at the heart of our decision-making processes, programme development, and service delivery.” 

SEND Bereavement Support

SEND Rapid Response training

Our SEND Rapid Response training offers bereavement training and support for schools needing urgent help.

The course is available to teachers and schools following a death in the school community. Find out more about our new training.

Supporting a bereaved child with SEND

For those supporting a child with SEND you may be inclined to want to protect and shield children and young people from difficult and sad situations.

But it’s important to have honest and open conversations, which is why we provide information and guidance to supporting children with additional needs and disabilities.

There are many stereotypes as to what a person with autism ‘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 child with ASD (Autism Spectrum Disorder). Instead, below is a range of things to consider when supporting a bereaved child who has autism.

Acknowledge their grief

A child may not respond to a death in a way that we expect. They may also not respond in a way that is similar to how other children react. This does not mean that they are not grieving.

Are they affected by the death?

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 a child with autism 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 then talk to the child using AAC (augmentative and alternative communication). Talk about the person who has died and how it is affecting the child.

Use very clear language

Euphemisms such as ‘they are no longer with us’ will be confusing to children on the autistic spectrum. They may interpret this as ‘the person is no longer living with us. They are living with someone else, so we may get to see them again in the future’. Read our advice on telling a child with special educational needs and disabilities that someone has died.

Use social stories or comic strip conversations

Many children with autism spectrum disorder (ASD) 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.

Continued below…

Social stories about grief and bereavement

How to tell a child with SEND that someone has died

Do children with SEND understand death?

Look for a change in behaviour

A bereaved child with autism 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. Some children with autism may struggle to see how the death is impacting others. They themselves may not be too affected by the bereavement but others around may be, which they cannot understand. This may result in them appearing insensitive to others.

Help to answer tough questions

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.

Preoccupations may increase

The child’s preoccupations, if they have any (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. Children with autism 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.

Talk about rituals and events in advance

After someone has died there are many rituals that can take place. The child will probably never have experienced most of these before, such as dressing up to go to a big building that echoes and having to sit still on a very hard pew. Such things can seem strange and bewildering. Talk to the child about such events and rituals in advance of them taking place. If possible, support this with a social story and having practice runs, e.g. visiting the church before the funeral etc.

Sensory difficulties

A child with autism may experience sensory difficulties (issues with smells, sounds, textures, light etc.). There can be many sensory elements associated with funerals – wearing restrictive formal clothes to a memorial service, the scent of flowers, the feeling of sitting on hard seats and immovable pews. If your child experiences such sensory difficulties, try to:

• Alleviate as many of these as possible (e.g. do they have to wear a shirt and tie to the service?)
• Adapt to the situation (e.g. take their favourite cushion and blanket to the church for them to sit on)
• Prepare them for the differences that are going to occur with social stories, trials of the sensory issue (e.g. practise wearing different shoes) and visits (to the new environment they will be visiting)

Getting professional grief support

If you are supporting a child or young person who is struggling with their grief, please call our Freephone Helpline team on 08088 020 021 (8am -8pm, weekdays), email ask@staging.winstonswish.org or use our live chat (8am-8pm, weekdays).We are here to help and can provide advice, support, and resources. Winston’s Wish provides support for children, young people up to the age of 25 and adults supporting them.

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Supporting bereaved children with SEND

Advice and resources to support a child or young person with special educational needs and disabilities after the death of someone important.

Specialist book: We All Grieve

Practical advice to help adults supporting grieving children and young people with SEND. Includes information, practical suggestions and activities.

We all grieve and children with special educational needs and disabilities (SEND) are no different. Stories and books are a great way to help all children, especially children with SEND, explore their grief. So, our practitioners have chosen some books that may help children and young people with SEND to understand grief and bereavement.

Children and young people with additional needs will feel grief. Some may find it hard to remember and feel connected to the person who has died. Some may have difficulty understanding death and it may impact on their ability to manage changes that comes after a bereavement.

Young people with SEND may be able to benefit from books which are aimed at their developmental age (the age they are functioning at) rather than their chronological age (the age they actually are). These are our suggested books. You will know the child or young person best so take a look and see which you think may work for them.

Remembering Lucy: A Story about Loss and Grief in a School

Sarah Helton, age 3+ years

An illustrated story book about bereavement and grief for children attending SEND schools. Joe, an eight-year-old boy who attends a special school tells the story of his school and what happens when one of his friends dies.

Life is Like the Wind

Shona Innes and Irisz Agocs, age 3-6 years

A simple explanation of life and death with beautiful illustrations. The book explains different ideas about what happens after death but ends with ‘like the wind life must leave and go somewhere else’ and allows the reader to make up their own mind.

I Miss You

Pat Thomas and Lesley Harker, age 3-6 years

This book has clear and simple text and includes question prompts throughout to spark conversation. It does talk about someone’s soul but could be adapted by the reader if that’s not your belief.

A Jumble of Knotted Thoughts

Sarah Helton, age 4-7 years

A sensory story to support bereavement and grief. The story is written for individuals with special educational needs and disabilities (SEND) and young children (primary school age).

Badger’s Parting Gifts

Susan Varley, age 4-8 years

A lovely picture book using animal characters that may help children to understand and relate to feelings related to bereavement.

The Day the Sea Went Out and Never Came Back

Margot Sunderland, age 4-12 years

With beautiful illustrations, this is an ideal book for starting conversations with children about grief and sadness.

A Sky Full of Diamonds

Camille Gibbs, age 5-9 years

Written in the first person, this is Mia’s experience of the different emotions of grief after her mum dies. The book is very visual with great pictures, but it is quite wordy so better for young people with an older developmental age.

I Have a Question about Death

Gaines and Polsky, age 5-11 years

This book is written specifically for children on the Autism Spectrum or with other additional needs. It is from the point of view of a young person who has just found out someone has died, and they have lots of questions, which are answered in a simple way through images and straightforward answers.

Upside Down, Downside Up

Ilze lee, age 7-10 years

Told through the eyes of eight-year-old Leah, this book tells the story of two young siblings learning to cope with the death of their father. Taking a step-by-step approach, this is a chapter and journal book with some great activities throughout. It’s not specifically aimed at young people with additional needs but could be accessed depending on individual needs.

The Goodbye Book

Todd Parr, age 3-8 years

Told through the eyes of a pet fish who is now swimming alone, this book shows how to say goodbye in a very accessible way. With simple pictures and short sentences, this book can be enjoyed by all.

Support for grieving young people

Our bereavement support workers are available to offer information, guidance and support, right away. Reach out on 08088 020 021 or use our live chat (click the blue ‘chat’ button on the bottom right of your screen) between 8am and 8pm, Monday to Friday. You can also email us on ask@staging.winstonswish.org and we’ll get back to you within two working days.

For out of hours mental help support, text WW to 85258 to speak with someone from our trusted partner, Shout. For urgent support in a crisis, please call 999.

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Supporting grieving children with SEND

Information, resources and support for grieving children and young people with SEND and those caring for them.

Book: We All Grieve

Our specialist book offers practical advice and activities to help adults supporting children and young people with SEND after the death of a loved one.

Telling a child or young person that someone close to them has died is one of the most difficult things you will ever have to do. It’s natural to want to protect them from any pain and when your child has special educational needs or disabilities you may wonder whether they will be able to comprehend what has happened.

The truth is that, regardless of their developmental stage, all children will experience a loss of some kind and will need support to understand what has happened and what changes they might expect in the future.

There are a few extra things to consider when telling a child with special educational needs and disabilities that someone has died – such as the child’s method of communication and their developmental stage rather than chronological age – but our advice is broadly the same. Put simply, this is:

• Consider the child’s functional age as this will determine their level of understanding around death
• Use clear, simple language appropriate for their developmental stage
• Use words like ‘death’ and ‘died’ rather than euphemisms like ‘passed away’ as these can be confusing for children
• Give information in small chunks
• Choose a calm place to tell them about the death
• Be prepared for questions and answer them honestly
• Repeat information and explanations to make sure they have understood

What does your child understand about death?

When talking to a child with SEND about the death of someone close, one of the most important factors to consider is the child’s functional age rather than their chronological age. This will help to determine what their level of understanding is around death and what language you should use. However, it is also important to note that a child with SEND might also present with a spiked developmental profile, meaning that they may be more developed in some areas and less so in others. If you aren’t sure, speak to other people who are supporting the child and together you can establish what they may be able to understand.

What do children with SEND understand about death?

Supporting bereaved children and young people with SEND

Use clear and simple language

Adults can sometimes feel inclined to protect young people from the harsh reality of death. It is natural to feel this way, especially when we think about all the other difficulties faced by children with SEND. However, it is crucial that adults supporting young people use language that is clear and understandable to children. Use words such as ‘death’ and ‘died’ rather than euphemisms such as ‘passed away’ and ‘lost’. These accurate words make it clearer and easier to understand.

Give information in small chunks

It can feel overwhelming to think about all the information you might need to give a child and equally it can be difficult for a child to comprehend that information in one go. It can be helpful for children with special educational needs and disabilities to have details delivered in smaller chunks and given over a period of time. Imagine giving this information as a jigsaw. Initially, a child may only need a four-piece jigsaw – Mummy has died and she cannot come back – but over time, they can manage an eight-piece or 12-piece jigsaw. What information you give them will be determined by their level of understanding. Give information slowly and stop regularly after sentences so that the child has time to process what you are telling them.

Choose a calm place to tell them

Most children will always remember where they were and who told them that someone has died. For children with SEND, it is important that you consider the environment that you are sharing this information. Chose a place that is calm and relaxing and sit alongside them rather than in front of them as you share the difficult news. Sometimes, people feel able to open up more if they don’t have to look someone in the eye and you can still be available to offer comfort in the form of reassuring touches if appropriate.

Social stories about grief and bereavement

Supporting a bereaved child with autism

Answer questions honestly

If children ask questions, it’s important to answer them as honestly as possible. If you tell half-truths or lies now, children may find out the truth later and this can cause feelings of distrust. Of course, sometimes young people ask questions we do not have the answers for. It’s ok to say to them “I don’t know the answer to that question, but I will try and find out for you” and it’s important that you follow this up. Children have a way of asking questions that adults haven’t even thought about, such as “what temperature does a body get cremated at?” However small and insignificant the questions might seem to you, these will be incredibly important to the child and will play a part in their processing and understanding of what has happened.

Be prepared to repeat information

For children with SEND, it is possible that they will need the information reiterated many times. If you are grieving yourself then it can feel a huge task to continually go over what happened so it is important that there are several people who can do this. Make sure that you are all sharing the same information to help with consistency. It can feel tempting to assume that if a child has stopped asking questions then this means that they have fully understood, but it’s best not to make assumptions – you may need to instigate the reiteration of what happened.

Use the child’s preferred method of communication

Don’t forget to use the child’s method of communication, such as sign language, symbols and PODD books. These tools can also help support children to process and understand information. When we are told difficult news this can impact our ability to use certain skills, such as communication, so having supporting tools may be useful even if a child has verbal skills.

How to get specialist support

Our team can offer more advice, information, resources and support to help you support a grieving child or young person. You can call us on 08088 020 021 (8am-8pm, weekdays), email us on ask@staging.winstonswish.org or use our live chat (8am-8pm, weekdays).

For out of hours mental help support, text WW to 85258 to speak with someone from our trusted partner, Shout. For urgent support in a crisis, please call 999.

Other resources you might find helpful

We All Grieve

Our specialist book offers practical advice to help adults supporting children and young people with SEND after the death of a loved one. Includes information, practical suggestions and activities.

How to use a memory box

Step-by-step instructions on how to use a memory box to keep pictures, cards and treasured items and help bereaved children maintain memories of the person who has died.

For a child with special educational needs and disabilities, their functional level of understanding (rather than actual chronological age) will be the biggest factor in how the child reacts to a death and what they will be able to understand. Knowing what children at different developmental stages understand about death will help you feel more confident when talking to them about a bereavement.

Please bear in mind that children with SEND can often have spiky developmental profiles and therefore do not always fit neatly into one box. The bereaved child you are supporting may display aspects of one or more the developmental stages.

Functioning at 0-12 months level

The death of a parent/significant caregiver will be understood as the absence of the person who cared for them. They will acknowledge and miss the touch, sound, smell etc. of this person, but they will not understand why they have gone.

Other deaths will be experienced by the child as a change in their environment. They will pick up on the emotions of the people around them who are grieving and the possible subsequent changes in their daily routines, although they will not understand why.

They can feel strong emotions but they are unaware of what these are or what is causing them.

How to tell a child with SEND someone has died

Books to help children with SEND understand grief

Functioning at a 1-3 year old level

They may be aware that someone is missing, but will not fully understand why.

They will not understand the finality of death and so may expect the person who has died to come back.

They will notice the changes in their life caused by the death, particularly changes relating to their routines and care.

They will react to other people’s emotional states, which they may not understand.

Functioning at a 3-5 year old level

They will struggle to understand what ‘dead’ means and they may expect the person who died to return.

They will miss the person who has died.

A child at the top end of this developmental level may understand some of the physical reasons behind a death but will still find this difficult to grasp.

They may be able to recognise some feelings but are unlikely to be able to link it to their grief.

Functioning at a 6-9 year old level

They will be beginning to develop an understanding that death is irreversible.

They will understand that death is something that will happen to all living things but they may still be confused about it and have many questions.

It is not uncommon for children at this developmental level to think of death as something spooky, like a monster or a spirit that comes to get you.

Supporting a bereaved child with autism

Social stories about grief and bereavement

Functioning at a 10-13 year old level

At this developmental level, children are much more aware of the finality of death and the impact death has on them.

They are able to understand death as both concrete and abstract.

Children at this stage are beginning to think of the longer-term consequences of the loss of the relationship.

They are aware of the loss they feel in the present but also of the losses they will experience in the coming months and years. The child will begin to understand that there will be further grief in the future – as the person who has died will not be with them for important milestones or occasions.

Functioning at a 13+ year old level

At this stage, children will have a full understanding of death, the fact that it is permanent and that it is something that affects all living beings.

Further support:

Our specialist book, We All Grieve, offers information, practical support and ideas for activities to help adults supporting children and young people with SEND who have experienced the death of a loved one.

Our experienced team can offer advice and guidance to parents, carers, teachers and other adults supporting bereaved children with special educational needs and disabilities. You can call them on 08088 020 021 (8am-8pm, weekdays), email ask@staging.winstonswish.org or use our live chat (8am-8pm, weekdays).

Other resources you might find helpful

We All Grieve

Our specialist book offers practical advice to help adults supporting children and young people with SEND after the death of a loved one. Includes information, practical suggestions and activities.

Supporting bereaved children with SEND

Advice and resources to support a child or young person with special educational needs and disabilities after the death of someone important.