Sunday, October 1, 2017

Helping Autistic Children Understand Death and Dying

Maxfield Sparrow
unstrangemind.com

Don't cry little princess
Photo © Benedic Belen | Flickr/Creative Commons
[Image: Black-and-white photo of an Asian woman comforting a small crying child
who is wearing a tiara, and has their hands over their face.]
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.