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Situation stories explaining the concept of death

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Situation stories explaining the concept of death

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Social Stories about Grief and Bereavement

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Download our free social stories to talk about death, grief and bereavement with a child or young person with autism.

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Scroll down to find 'When you were gone' (black background, white feather)

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Scroll down to find 'When you were gone' (black background, white feather)

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Online Sensory Story training available now

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The death of a parent, sibling or friend is one of the most traumatic experiences for a child or young person and it can be hard to know how to talk to them about it. In this honest, comforting and strength-building guide Julie Stokes, a clinical psychologist and founder of childhood bereavement charity Winston's Wish, provides readers with the tools they need to navigate this tough and turbulent time.

Readers will discover the stories of other people who have been through grief themselves. They will learn how to flex their 'grief muscles' in order to develop confidence, trust, grit, a resilient mindset and flexible feelings - the ability to notice, accept and talk about emotions when they choose to. And packed with practical exercises, such as creating memory boxes and managing different kinds of memories using 'memory stones', this guide will give readers helpful ways to manage their grief so they can begin to move forward with life.

Because there is no right or wrong way to grieve, you just need to find your own way "The book I wish someone had read with me when I was young" Kristin Scott Thomas

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You Will Be Okay: Find Strength, Stay Hopeful and Get to Grips With Grief

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Buy You Will Be Okay: Find Strength, Stay Hopeful and Get to Grips With Grief by Stokes, Julie (ISBN: 9781526363893) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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Get help explaining death to children. Explore our free, bilingual resources for families, providers, and teachers on coping with grief and loss of loved ones.

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Issues covered include bereavement and loss policies and procedures, an appropriate curriculum (including the issues of life, death and loss), how to inform the school community of the death, how to support pupils and staff with the loss, common signs of grieving and how grief affects children at different ages and developmental stages, plus activities and resources to support pupils with their grief. There is also an extensive appendix with template documents for schools to use such as draft letters, policies, procedures, curriculum and lesson ideas.

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A Special Kind of Grief: The Complete Guide for Supporting Bereavement and Loss in Special Schools (and Other SEND Settings)

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Buy A Special Kind of Grief: The Complete Guide for Supporting Bereavement and Loss in Special Schools (and Other SEND Settings) by Sarah Helton (ISBN: 9781785922732) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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When she died and they learned they wouldn't see Lucy again they were all very sad.

But Joe has a plan: he can remember the happy times he shared with Lucy!

He thinks about all the wonderful things Lucy did. How messy she was when she was painting, and the time she giggled through the school play when her crown kept slipping off. Now Joe knows that remembering Lucy means he doesn't have to feel so sad!

Children with SEND (special educational needs and disabilities) often experience grief at a much younger age than other children. This touching short story will help children with SEND aged 3+ understand feelings caused by death and loss, and the beautiful hand drawn illustrations help convey the complex experience of bereavement in a simple and clear way. Included is a teacher's guide to talking about bereavement, grief and loss, making this the ideal aid for teachers and support staff at SEND schools and colleges.

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

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Buy Remembering Lucy: A Story about Loss and Grief in a School by Sarah Helton (ISBN: 9781785923074) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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Supporting bereaved children who have special educational needs and disabilities.
In the past, the needs of bereaved children with SEND have not always been considered. We All Grieve looks at how children with SEND are affected by a bereavement, how those around them can support them and help to develop the child's understanding of death and loss.

This book is designed for parents, carers, educational professionals and other adults supporting children and young adults with SEND who have experienced the death of someone close to them. It offers information, practical suggestions and ideas for activities, as well as where to find other support.

We All Grieve has been produced thanks to funding from The True Colours Trust.

Price includes P&P costs. We can only ship to UK addresses.
﻿Now available in e-book for £5.49. View here.

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We All Grieve - Supporting bereaved children with SEND

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Specialist book to help parents, carers, teachers and other professionals supporting children and young adults with SEND who have experienced the death of someone close to them. It offers information, practical suggestions and ideas for activities as well as where to find other support. Written by Winston's Wish.

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I Have a Question about Death: Clear Answers for All Kids, including Children with Autism Spectrum Disorder or other Special Needs: 1

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Buy I Have a Question about Death: Clear Answers for All Kids, including Children with Autism Spectrum Disorder or other Special Needs: 1 Illustrated by Arlen Grad Gaines and Meredith Englander Polsky (ISBN: 9781785927508) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.

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There are lots of types of grief + loss - validate how your young person is feeling, even if it's not a big deal to others

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There are lots of types of grief + loss - validate how your young person is feeling, even if it's not a big deal to others

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Special Education and Inclusive Learning

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No one likes to think about death, let alone talk about it and who feels comfortable talking to children about death?! Being blessed with life means that we also have to cope with others dying and manage the associated emotions of grief. 2020 has sadly meant that we have all had to think about death more.

We already teach children about so many feelings - what happiness, sadness and anger are, how they make us feel and how to manage these emotions. Now it is time to ensure we do the same for grief.

One way that we can do this is through play, yes play.

A child's natural way of learning is through play and exploration. Children learn about all aspects of life through play: shopping, cooking, going to the doctors etc. What about if we applied the concept of play to learning about the other aspects of life - death.

Can we provide children with a way to explore their experiences of death, bereavement and grief through play?

Good Grief Toys ® is a new and unique resource which allows children to learn about difficult situations and process their associated emotions through play.

What are Good Grief Toys?

Good Grief Toys is a set of 45 multipurpose wooden pieces, including people, vehicles, animals and furniture (that can represent a home, hospital, church etc.) Each wooden piece can be used in a versatile manner to represent an infinite number of situations. These include visiting Granny in hospital, being told that Granny has died, preparing for a funeral, attending a funeral, returning to school after a bereavement, the possible scenarios are endless.

Why do we need such a resource?

To support children to understand what has happen and why.

Prepare children for what will happen in the future.

To further help the families that you work with. (It is a resource that a Family Support Worker can use with families and lend to them).

For many of the children that you work with this will probably be the first bereavement that they've experienced and the first funeral that they will attend. Good Grief Toys allows you to better support children at this difficult time.

Providing children with engaging toys to explore difficult scenarios through play. Providing adults with the tools to help start tough conversations and explain difficult situations. This toy set has been designed to support children with all forms of grief (not just grief related to death).
Scenarios that children can explore with Good Grief Toys:

illness/death at home

visiting someone in hospital

illness/death in hospital

visiting someone in a hospice

illness/death in a hospice

illness/death of a pet

attending a funeral/memorial service

returning to school after a bereavement

road traffic accident

fire at home

domestic incident

parents separating/divorcing

visiting parents in different homes/places

moving into a foster/care home

attending respite care

grief related to friends or family members moving away

grief related to having to move school

a child learning about their Special Educational Needs/Disability and coming to terms with possible associated grief

Other uses for Bereavement Figurines

Adults can use these toys to help:

support difficult conversations.

provide information about something new/different that is going to take place.

teach new routines or behaviours.

* This list is in no way exhaustive. You can explore an infinite number of scenarios.

How do organisations working with children use Good Grief Toys?

As a resource that:

is available in your school/centre etc. for children to explore.

staff and family members to use to help explain to children what has happened and what is going to happen.

you can lend to families.

How to use Good Grief Toys to Support Young People with Bereavement

A member of staff or family member can use Good Grief Toys with a child/ren to help deliver information, explain what has happened, or what is going to happen.

An individual child can explore the toys through 'free play' - allowing them to delve into what has happened, process their emotions and to help them prepare for what is going to take place, the funeral, cremation, burial etc.

Good Grief Toys are simple and easy to use. Just open the box and start playing.

You do not need to be a counsellor or therapist to use Good Grief Toys, you just need to have empathy and understanding for what the child is experiencing. Good Grief Toys provides you and the child with the tools needed to explore the difficult concepts and emotions around death, through play.

Play is a child's natural way to make sense of the world. Good Grief Toys enables children to learn about death, bereavement and grief in a manner that they are familiar and comfortable with - play.

Making sure you get the best out of Good Grief Toys

All schools have bought a great resource that only one member of staff has the confidence to use. To ensure that you get the very most out of your purchase every toy set comes with free support from BackPocketTeacher

With every purchase of Good Grief Toys BackPocketTeacher provides you with a package of free advice, training and support - to ensure you get the very most out of your toys.

You will receive 3 hours of remote support and training (which can be used at anytime during the 12 months after the purchase of Good Grief Toys). You choose how and when you use your time. Below are some ideas:

to deliver online training with staff on how to use Good Grief Toys

provide advice and training on how to best support bereaved children

to provide advice and training on how to best support bereaved children with learning disabilities

Information about Good Grief Toys

This toy set has been 100% designed and created in the UK.

Good Grief Toys is a made up of 45 handcrafted wooden toys. Each set has been handmade by an amazing independent UK toy maker.

Good Grief Toys are CE marked and meet all of the UK and EU toy safety standards as set out in the Toy (Safety) Regulations 2011 - specifically European standard EN 71 which covers all safety requirements for toys. Compliance with this standard is a legal requirement for all toys sold in the European Union. Good Grief Toys are made from sustainable wood and painted with non-toxic paint.

This toy set is not appropriate for children under 3 years of age due to it containing some small parts which are a choke risk.

About Sarah Helton

Sarah has worked in the Special Educational Needs/Disabilities (SEND) field for nearly 25 years and has an outstanding track record in a diverse range of roles (Deputy Head, Assistant Head, Teacher, Local Authority Education Officer and Educational Publisher).

Having worked with many pupils who had been bereaved and sadly experiencing the deaths of pupils that she taught she developed an immense interest in how we can better support bereaved and grieving children. Sarah now works as BackPocketTeacher - an author, trainer and consultant in the field of child bereavement, specialising in the (sadly often overlooked) needs of bereaved children with SEND.

In autumn 2020 Sarah began studying for a PhD alongside her work as BackPocketTeacher. She is researching bereavement and SEND.

She also works as a training facilitator for the national bereavement charities Winston's Wish and Child Bereavement UK.

Follow Sarah's work and research on her website www.backpocketteacher.co.uk and social media accounts
Facebook @BackPocketTeacher Twitter @BackPocketTeach JustGiving
Sarah is currently fundraising to provide 10 UK bereavement charities and 10 UK schools to have a set of Good Grief Toys. This toy set provides children with engaging toys to explore difficult scenarios through play and gives adults the tools to help start tough conversations and explain difficult situations.

Schools that will receive a set of Good Grief Toys: Mountjoy School, Beaminster, St Nicholas School, Chippenham, Baytree School, Weston-Super-Mare, New Fosseway School, Bristol 1 more to be announced soon.

Charities that will receive a set of Good Grief Toys: Winston's Wish, Bodie Hodges Foundation, Pamis (Promoting a more inclusive society) 2 more to be announced soon.
And you get to choose 5 more schools and 5 more charities to receive a set of Good Grief Toys. Just type the name of the school or charity that you would like to nominate in the message box after you donate. www.justgiving.com/crowdfunding/goodgrieftoys

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Bereavement: Let's Talk About Grief - Special Education and Inclusive Learning

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We already teach children about so many feelings, how they make us feel and how to manage these emotions. Now it is time to ensure we do the same for grief.

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Supporting Autistic CYP with grief and loss, death and divorce

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Supporting Autistic CYP with grief and loss, death and divorce

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Supporting Individuals on the Autism Spectrum Coping with Grief and Loss through Death or Divorce: Articles: Indiana Resource Center for Autism: Indiana University Bloomington

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The focus of this article is on how children and adults, on the autism spectrum, may experience loss due to death or divorce and how to provide support through the grieving process.

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Telling a child someone has died | Winston's Wish

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Telling a child someone has died will be the hardest thing and often knowing how much to tell them is just as hard. Our team at Winston's Wish help guide you through.

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Helping autistic CYP understand death and dying

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Helping autistic CYP understand death and dying

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Maxfield Sparrow
unstrangemind.com

The Thinking Person's Guide to Autism asked Autistic adults to fill out a survey about death and dying to create a resource for people who need to explain death to Autistic children. The response was tremendous-in less than a week the survey had 50 responses, mostly from Autistic adults. What follows is a summary and analysis of the responses. We hope it is useful to you, your child, your family, your clients, and your students.

Please note that some of the responses discuss difficult material, including suicide, and suicidal ideation/threats.

Bullet Point Summary

Autistic adults were surveyed about death and dying.

Most learned about death through observation of people, animals, and plants.

Learning about death was a process rather than a one-time event.

A majority of Autistics said Autistic children want factual statements, not euphemisms about death.

Autistics want the right amount of information about death - not so much it overwhelms, but not so little their questions go unanswered.

Don't expect Autistic children to express grieving emotions in the same way or on the same timetable as the people around them.

Links to books and other teaching materials can be found in the last section of this article.

This article discusses those responses to five questions about ways Autistic children learn about death, the most and least useful ways to help Autistic children understand death, and recommendations for adaptive communication technology for talking about death. I have attempted to quantify the answers but also share some representative quotes to help illustrate these responses in a more qualitative manner.
Question One: If you are Autistic, how did you become aware of the concept of death?

Most respondents learned about death through experiencing the death or a person (20), or a pet or other animal (11). It is worth noting that many survey respondents spoke of becoming aware of death as a process happening over the course of more than one death or other learning experience. Respondents often said they were quite aware of death for many years, but it was only with the death of a person or animal close to them that they finally experienced an emotional impact that moved their understanding of death and dying from an abstract concept, to something personal they had to cope with emotionally.

"I was introduced to Death being dragged to funerals as a child, but death never clicked. I never lost a close family or an animal until I was 16 and my grandpa died. That's when I became aware. I wouldn't experience my next death until 25 with my dog and I struggled with reality and depression and confusion. The devastation of both events have had major negative impacts on me solely due to not understanding or learning what death was as a child." -Sophia

"The very first death I ever dealt with was with our dog Rex. [...] I didn't really apply my knowledge of death to people yet at that point though. Pet death seems to be a different context in my brain than people death though. I think part of my issue as a kid was taking one context and applying it to other contexts. My great grandpa died when I was 3 though, and my uncle died in a more terrible way when I was 4. [...] By the time I was 8, death and grieving, I don't want to say was "old hat" but, I was more aware of what was going on. [...] By the time I was a pre-teen, I didn't know what to make of people who hadn't experienced loss." -Anna J

The next most common answers were from those who weren't sure how they first learned about death or who felt as if they had just always known about death. Eight answers included something along these lines.

"The same way as everyone else?" -Anonymous

"I can't really remember any one particular moment of becoming aware of the concept of death, which means I probably learned it slowly through media exposure. I did attend my great-aunt's funeral when I was a toddler, and according to my grandmother I did ask if she was sleeping in the casket, but I have no memory of this." -Billie

"I just knew about it. Like I did about sex, gay relationships, etc... It wasn't a big deal." -Jade

"I honestly don't remember NOT having a concept of death." -Anonymous

Four Autistics reported learning from books at home or at school.

"2nd grade. Teacher died. Other teachers thought it would be a good idea to read the class a book on weather seasons more specifically autumn. Basically leaves get old on the tree and die and fall off. Life is a cycle in nature. Everything dies kinda lesson. So every time I see a leaf on the ground or in the process of hitting the ground I think of death." -Michael

"I started thinking about death and dying when I was two years old. I could read fluently by then and my parents didn't know that and my mum left her horror books lying around and I read them. There was a lot of death in those stories and that is how I learned about it." -Michele Brenton

"I read about it in a book about "difficult subjects" to explain to children." -Anonymous

Three people learned about death and dying through their religious education.

"We learned about it in Jewish day school. One of Maimonides 13 articles of faith is that the dead will come back to life. I used to have nightmares about green people crawling out of the dirt at the end of the world. That's my earliest memory of the concept of death." -Sara Luterman

"I don't remember. My grandparents said that dead people were in Heaven when I was a kid and asked about it. I didn't know anyone personally who had died until I was an adolescent. [...] Heaven was a concept that made sense to me because I could picture it as an actual place, and I was most likely satisfied with the explanation of Heaven, especially because the teacher would sometimes discuss Heaven in Sunday School at church." -LB

Two learned through watching television or movies.

"It was pretty much told to me that people don't live forever, their bodies give out just like with Rex, and that people are looking down from heaven at you when they pass (I think with Rex, everything was also solidified later with All Dogs Go To Heaven)." -Anna J

And two answers were each in a category all their own.

"My mother threaterned to kill herself in front of me when she was 2 and explained she would go away forever and I would have no mummy ever again." -Anonymous

"Through continuous exposure with the word (vocabulary building) using pictures and videos." -Trixie

A theme that emerged from many responses was that of knowing about death but still being unprepared for the intensity of grief when death finally took someone important in a person's life. This, combined with frequent reports of learning about death as an ongoing process that deepened not only with more personal experiences with death, but also with ongoing exposure through books and movies, suggests that helping Autistic children learn about death is not a one-time event, but an ongoing journey.

Adults need to be aware that an autistic child's intellectual understanding of death should not be mistaken for the fuller understanding that may only come with personal loss and grieving.

Question Two: What do you think is a reasonable and helpful way to help an autistic child understand the concepts of death and dying, based on your personal experience (and with the understanding that autistic children have different personalities)?

An overwhelming majority of responses (26) mentioned honesty, taking a direct approach, explaining the facts.

"Factual, acknowledge feelings, use calm voice, agnostic but hopeful on the afterlife. Death ritual with an insect or animal." -Anne

"I think a straightforward explanation that demystifies the experience is the best approach, perhaps something along the lines of "eventually people and animals' bodies stop moving around and the things that made them go leave forever." Most children are naturally curious, and as an autistic person I've always gotten particular satisfaction from understanding the WHY of something." -Billie

"Frank but gentle explanations" -Laura

"Being honest. Allowing involvement in the process where possible." -Niki

"I think the younger and more logic-bound someone is, the more explicit you have to be about it." -Anna J

"Explain it truthfully, using hard facts. Don't give us a ton of silly convoluted metaphors. [...] You don't have to coddle an autistic child about it the way you would a neurotypical child. Trust me, we don't appreciate it." -Anonymous

Six responses mentioned using books, movies, or articles to help explain death.

"I think it depends on your religious beliefs and whether or not you believe in Heaven. There are real-life stories I've read in the news about how (presumably neurotypical) young girls learned to understand what death meant, from a religious family and a secular one. I would recommend reading one of those stories to your child (or together with them) depending on your family's belief system. I liked having real-life examples of other kids handling similar issues to mine, especially when they were also girls (since as a kid, I was convinced most boys had cooties)." -LB

Five responses discussed explaining non-autistic grief styles versus autistic grief styles to help everyone accommodate everyone else's different grief needs.

"Facts, science about what happens to the body at death and practical tips about stages of grief for normals (strange things they might say like, "He's in a better place." means they cared about them when they were alive and saying that is a way of saying they are sad-- Not that that a coffin or urn is a better place to be). Listing common phrases like "Sorry for your loss" and what the person is really communicating would be helpful" -Sarah Robinson

"Remind them that NT [non-autistic] people often grieve in a set of specific ways (i.e., crying, talking about memories of the deceased person, cleaning/leaving their things, more irritable). Autistic people may grieve in different ways (i.e., Shutdown/meltdowns, extra hypersensitive, avoidance, frustration) or not at all. Grieving differently is ok, and no one is doing it wrong. Being aware of those differences reminds everyone to give each other the space necessary to process the event." -JAL

"I understood what death was. I did not understand the rituals and emotions surrounding it. I did not understand what was expected of me and why. People thought I didn't grasp that my dad was gone so they made me look at the body. It was horrible. I knew about death. I needed to be allowed to NOT respond to everyone else's emotions all the time. I needed some kind of explanation of why people were acting the way they were, crying and touching me. I needed some routine, calm, and reassurance." -BGP

Four responses mentioned acknowledging feelings and, in particular, the emotions surrounding coping with change.

"Accommodate the fact that an intrinsic part of loss is change. Especially for an autistic person. Death can be upsetting not only because someone they love is gone, but because that means their world is disturbingly different." -Sara Luterman

"I do think it's important to let a child know that it's okay to be sad. It's okay to laugh and doesn't mean you aren't also sad at the same time. It's okay to talk about the person or pet that is gone. I felt afraid to talk about my brother." -Maxfield Sparrow

Three responses mentioned the importance of visual materials when explaining death. Three responses talked about exposing Autistic children to the concept of death through observing and discussing the death of plants and/or animals.

"For me, it helped that my mom did not hide the fact that my pets had died. She was honest that my little friend had permanently lost all biological function, let me view the body (allowing me to touch when possible) and would help me prepare a memorial ceremony for each pet. Experiencing the cycle of life as concrete reality really helped me prepare for the loss of relatives when I was older." -K. Hall

Two people specifically mentioned the value of using social stories as well as building a vocabulary of words helpful in talking about death.

"Vocabulary building using social stories, videos, pictures of death, burials, and mourning people (given that the child is aware of the concept of emotions)." -Trixie

One participant mentioned the importance of giving an Autistic person extra time for processing grief.

"And don't have them rush grieving. It may take them a long time to grieve someone. I know it still does for me. Usually I have to come to it on my own terms until my subconscious is able to have closure." -Anna J.

Question Three: What are some misguided ways to explain death and dying to autistic children, and why (again, in your experience)?

The number one response to this question was to avoid using euphemisms or unclear language. Euphemistic phrasing was mentioned in 23 responses, and had a big overlap with the 13 people who said to leave religion out of explanations of death. Among those who specifically said to avoid religion, the reasons varied from religion being too abstract and full of euphemistic language, to religion being "wrong" or "a lie," to religion being okay for comforting adults-but too confusing for children who are just learning about death.

"Lies like "they go to heaven." That doesn't make sense, is incomprehensible, overly complicated and would just irritate the rational-minded autistics." -Katharina

"I was told in vet tech school to never ever use euphemisms such as putting a pet "to sleep," as children might take that literally. Do not, under any circumstances, try to hide the fact that a pet has died by saying it ran away, or sneak off to replace it with an identical pet. Also, abstract concepts like an afterlife can be difficult for Autistic children to understand, even though I take some comfort in them as an adult." -K. Hall

Two responses came from three people each: don't avoid the topic, and don't overwhelm a child with too much emotion or more involvement than they want. Two people each said: don't lie or underestimate a child, and don't teach about death through threats or other frightening interactions. Finally, one person each mentioned the following: don't give false reassurances like "I'm not going to die for a very long time." don't treat kids with a one-size-fits-all formula, and don't deny the family's religious beliefs.

Question Four: What other aspects of the explaining the concepts of death and dying do you think adults should be more aware of, when it comes to the experiences of autistic children?

The majority of responses to this question (16) repeated the earlier advice about keeping things factual and sharing as much information as a child asks for or appears to need. One response gave a general rule of thumb for deciding how much detail a child might need:

"I would recommend really thinking about how the child reacts to other things and base how you approach this subject in the same way they would want you to approach something else rather than basing it on their age alone, if this is a child (like I was) who wanted to know the species and genus names of dinosaur toys when they were 3-4 years old and would explain what features on their toys did not fit those species and genus, they probably do not want an explanation of death that is any less exact (which isn't to say you should not be sensitive, they will probably still be upset, especially if it is a loved one or pet, but using flowery/euphemistic language might just make it more difficult)" -Brit

The next most common (8) response group were Autistics who talked about not shaming a child if they do not respond in any particular way or on any expected "timetable" and not making emotional demands about how (or whether) emotions are experienced or expressed.

"They shouldn't shame the child for not showing grief or showing grief another way. I remember that I didn't cry when my grandparents died, but when our dog died, it was very hard for me. People might say I didn't love my grandparents just because I didn't grief like they might. So, not shaming is important." -Katharina

"Sometimes autistic children don't grieve. This may be hard to hear, but sometimes there are people that we are "supposed to" feel close with, such as extended family members, that we don't have a personal connection to. This could be due to not having spent a lot of time with them, or not feeling a lot of care for a particular person. For these people, the autistic children may not grieve, per se, yet be responding to the grief of others around them. They still might still need help understanding why the people are so sad, or why the deceased person won't be around. My point here is, don't get mad at children if they do not feel or experience grief, or in the same way you do." -JAL

"Understand that autistic children may not respond as you would to grief. Using the above example [When my third cat was dying, I asked to accompany my parents when he was to be put down, only to be sharply rebuked as insensitive], my parents saw putting my cat down as a means to an end, whereas I saw it as a way to say goodbye. Autistic children may not act as if they are grieving, or their grief might explode outwards in ways you do not expect." -Nant Celas

"A child may need information repeated multiple times while they process the permanence of death. Be patient and strive to keep the child from feeling judged for needing to go over the same ground repeatedly." -Maxfield Sparrow

"We tend to have strong empathetic relationships with our pets, so treat the death of a pet like the death of a human relative." -LB

Three people had very helpful suggestions about maintaining routines during grieving or helping an Autistic child find their own role in the death rituals.

"Knowing the significance of routines in the lives of autistic people, a good approach may be to set up a sort of mourning routine if death is being explained in the context of a friend or family member dying." -Billie

"Giving them things to do to help (arrange photographs, hand out information for gatherings afterward, asking if they can get anyone a cup of water, etc.) Can give them a defined role" -Sarah Robinson

Along a similar line, two people wrote about letting children set the emotional pace and create their own symbolic gestures or routines that have meaning for the child.

"I think kids need some concrete ways of saying goodbye, some action that is meaningful to them. Rituals that are created for adults often aren't meaningful to autistic adults, much less kids." -BGP

"I think "people's legacy live on in their ideas" is important as I stated before that one way I utilize grieving is to commemorate the passed people through their rituals or habits. Like if my food tastes overlap, I might have something they were known to like for dinner and think of them that way, basically to draw back to happy times I spent with them." -Anna J

One person mentioned the importance of addressing death before someone close to the Autistic child dies and two other people suggested doing that by observing death in nature and using it as teachable moments.

"All kids who spend any time outdoors will see things die. Observing and talking about this is helpful." -Anne

"I like to explain the nitrogen cycle, and what happens to bodies after death. that we become plants." -Anonymous

While two people mentioned the importance of generally presuming a child's competence, two other people cautioned against talking about religion before a child is ready. Another pair, however, specifically recommended offering spiritual/religious explanations that involve teaching Autistic children that death is not the end of a person.

"Death and dying is not just about the body dying, it is about change and about experiencing a new different experience than what we already experienced." -J

One person talked about the importance of teaching a vocabulary of death, including medical terms. Another person recommended explanations along the lines of social stories and scripting responses.

"Taking the time to explain the process the body goes through, medical definition of death, and appropriate people and times to ask related questions can help frame an experience like a funeral. Children may need to have an agenda for the steps involved and expected physical touching (more hugs, seeing people crying, outbursts) and appropriate verbal phrases or responses can be provided ahead of time." -Sarah Robinson

Other responses offered by one person were: remember that grief can exacerbate sensory issues and meltdowns so give lots of quiet time, address the child's fears of future losses, talk about post-mortem consent and what constitutes a "good death," and stay calm and try to make the topic as emotionally light as possible.

Question Five: Can you recommend preferred adaptive, simplified, or AAC (augmentative and alternative) materials on this topic, for autistic children who use those approaches?

Most respondents either left this question blank or said they didn't know of any helpful resources. Here are all the recommendations that were offered:

"Don't know any. Rabbi Ruti Regan probably does, though." -Sara Luterman

"The Dead Bird is a pretty good book, by Margaret Wise Brown" -Anne

"We used to read the Funny Bones books by Janet and Allen Ahlberg. They were amusing and gave us a light hearted way to talk around the various ideas around the subject." -Michele Brenton

"Raising a small pet as soon as it is appropriate is a excellent way to teach about the whole entire life cycle, not just death." -K. Hall

"Gray's Guide to Loss is really good [note: we could not find a link, but here is an option]. I also appreciate that there have been a lot of recent books. There is a workbook about death and dying and loss which Catherine Faherty uses. Jessica Kingsley and Future Horizons books are also good. I am thinking of virtual ways and independent games and MUDs. TV shows might be good depending on the material-medical and legal series and romance books and magazines." -Adelaide Dupont

"Maybe for older children, I think the Everything Dies coloring book is actually really interesting and I would have appreciated it as a 9-12 year old" -Brit

"Social stories could be found on Google (for those who are capable of understanding social stories). For those with cognitive difficulties, maybe 'emotions' should be taught first, then 'social thinking' could follow next." -Trixie

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The Thinking Person's Guide to Autism would like to thank everyone who responded to this survey. Autistic adults are among the best resources for parents seeking to learn more about raising their Autistic children with compassion and understanding. Taking the time to share your experiences helps so many parents and their Autistic children.

Note: While some respondents were non-autistic parents of Autistic children, only responses from Actually Autistic people have been included in this analysis. The few parent responses repeated things already said by Autistic adults, so no useful information has been omitted by the choice to focus exclusively on Autistic voices.

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Helping Autistic Children Understand Death and Dying

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Maxfield Sparrow unstrangemind.com The Thinking Person's Guide to Autism asked Autistic adults to fill out a survey about death and dying to create a resource for people who need to explain death to Autistic children. The response was tremendous-in less than a week the survey had 50 responses, mostly from Autistic adults.

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Kristy Forbes - Autistic Support Specialist

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Grief & Loss from an Autistic Perspective (with Kristy Forbes)

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Children and teenagers with autism can struggle to cope with the loss of a loved one, and the complicated and painful emotions of bereavement. This book explains death in concrete terms that the child with autism will understand, explores feelings that the child may encounter as a part of bereavement, and offers creative and expressive activities that facilitate healing.

With illustrations throughout, this interactive book begins with a simple story about what happens when people die. Each chapter then expands on the issues that have been raised in the story and offers a variety of coping skills exercises including writing, art and craft, cooking, movement, relaxation, and remembrance activities. Encouraging children with autism to express their loss through discussion, personal reflection, and creative activity, the book is ideal for children and teens to work through by themselves, or with the support of a family member or professional.

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Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum

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Buy Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum Illustrated by Karla Helbert (ISBN: 9781849059220) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.