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Autism and Grief: What to Do and How to Prepare

August 12, 2021


All parents dread the day they have to explain death to their kids. Grief and loss are difficult for anyone to experience, much less young children. Parents of kids with autism may be even more worried about how to help them cope.

Autism and Grief: What to Do and How to Prepare https://www.autismparentingmagazine.com/prepare-autism-grief

Although this conversation will never be easy, there are things you can do to help prepare your child.

How do you tell an autistic child about death?

People on the autism spectrum often have a hard time grasping abstract concepts, so it’s important to be as clear as possible. 

Here are some tips:

Don’t use euphemisms

Expressions like “he went to sleep,” “he passed away,” “he went to Heaven,” and “we lost him” can be confusing to a child with autism. Most autistic people tend to interpret language literally, so your child might wonder why he/she can’t visit Heaven, become scared of going to sleep, or just not understand what’s happened.

Explain what death is

Depending on how old your son or daughter is, he/she might not have any concept of death. Use simple, honest words when talking about it. Tell him/her that death is the end of life, and it happens to all living things. Make it clear that death is permanent, but that you’ll always have the memories of that person. You could use examples from nature or fictional media to make it concrete.

Explain how the person died

An (age-appropriate) explanation of what causes death is essential to your child’s understanding. You might say that the person was old enough to die, that he/she became very sick, or he/she got hurt very badly and the doctors couldn’t help. 

Just be sure to differentiate between a typical illness or injury and a life-threatening one. A child might be scared if he/she thinks that a cold or scraped knee is enough to cause death.

Be open to questions

Your kid with autism might have a lot of questions, like whether he/she will die, whether you will die, and what happens to someone when he/she dies. Many children ask the same questions over and over while processing information, so be patient. Be honest in your responses and don’t be afraid to admit when you’re unsure about something. 

Both autistic and neurotypical children may not understand the concept right away, so think of learning about loss as a process rather than a singular moment. It could take weeks or months for your child to fully understand what’s happened. 

Prepare your child if you know the death is coming

Some deaths are sudden, but other times, a friend or relative has been sick for a while. Don’t wait until he/she has passed away to talk to your child. For one thing, your child may be aware that his/her family members are acting differently and be confused about why. When the person does die, it will come as a shock if your child had no idea he/she was ill.


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Using the tips above, explain that the person will die and what that means. If a visit is possible under COVID-19 restrictions, give your child a choice about visiting and clearly discuss what that would entail. For example, you might explain what a hospital is like and that your loved one might have lost weight and be weaker than usual. If your child decides not to visit, don’t shame him/her. Your child may want to write a letter, make a phone call, or send flowers instead.

Explain what comes next

For many families, the grieving process involves lots of events, such as a visitation, a funeral, a burial service, and/or religious ceremonies.

Children with autism are often anxious about unfamiliar situations, so help them understand what to expect. Detail the purpose and social norms of the upcoming events—social stories could help. Give your child a choice about whether to attend, and allow flexibility to take breaks or leave altogether if he/she becomes overwhelmed.

Common responses to grief and death in autistic children

All people have diverse reactions to loss. There’s no one model for how a child on the autism spectrum grieves, but according to the Indiana Resource Center for Autism, children with autism might…

  • Become unusually angry and aggressive
  • Become very anxious
  • Alternatively, they may appear too calm and composed
  • Wonder if they somehow caused the death
  • Experience regression, or a loss of skills
  • Be unable to verbalize questions and emotions 
  • Alternatively, they may be more verbal than normal
  • Have more problems with memory, organization, and attention span
  • Worry that other loved ones will die
  • Increase stimming behaviors 
  • Experience insomnia or loss of appetite
  • Have less bowel or bladder control
  • Have more meltdowns or shutdowns

It is also important to note that many autistic children have processing delays, which means they won’t process the information immediately. Behavioral changes can come some time, even months, later. Caregivers may not realize that the changes are actually part of the child’s grieving, so keep processing delays in mind.

The Thinking Person’s Guide to Autism, a blog about autism resources, held a survey asking autistic adults how to best support children with autism through bereavement. Many participants emphasized that you should accept your son or daughter’s responses and emotions, even if they seem unusual. 

One woman wrote: “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 [sic] like they might. So, not shaming is important.”

How to help a child on the spectrum cope with grief

Here are a few tips from the Indiana Resource Center for Autism…

Maintain routines

Try to keep daily routines the same as much as possible, and explain any temporary or permanent changes.

Participants in the Thinking Person’s Guide to Autism’s survey agreed, with one person with ASD adding: “Knowing the significance of routines in the lives of autistic people, a good approach may be to set up a sort of mourning routine…” 

Another wrote that, for older kids with autism, it can help to have a specific task during bereavement events: “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 [sic] give them a defined role.”

Watch movies or read books about death and grieving

Seeing death in a story may help your child understand the concept and feel less alone in his/her emotions. Of course, make sure the media you pick is comforting and age-appropriate.

Complete crafts and activities that honor your loved one

This allows your child to reflect on his/her memories and process his/her feelings in a positive way. You could try…

  • Making a scrapbook
  • Drawing pictures of the person
  • Making a memory box of items related to the deceased
  • Writing in a journal

A participant in the survey agreed, saying children with ASD might appreciate a unique way to honor their loved one’s life: “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.”

Validate your child’s feelings

Grief and loss are complicated. Sometimes, the best thing you can do to provide support is listen. Remind him/her that there’s no right or wrong way to grieve.

One person on the autism spectrum wrote that: “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.”

Provide a specific time to discuss the loss

According to the article, some children with ASD become overly fixated on the deceased loved one and want to discuss him/her all the time. Talking about it frequently is normal at first, but if it becomes a problem, you could build it into their routine and provide a “regular time, place, and person with whom they can discuss the topic.”

Access Cognitive Behavioral Therapy

Sometimes, people need extra guidance through their grieving process. Cognitive Behavioral Therapy (CBT) is commonly used to treat individuals on the autism spectrum. It’s based on the premise that one’s thoughts and feelings are interconnected, and that changing one’s thought patterns can lead to better emotional health. CBT is used for a variety of things, from anxiety, to depression, to bereavement.

Explain others’ reactions

This wasn’t mentioned in the article by the Indiana Resource Center for Autism, but several participants in the survey said it was helpful. Your son or daughter may be confused by the emotional reactions of family members and other expected behavior. 

One person wrote: “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 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.”

Another said that she needed an explanation that “‘He’s in a better place’ means they cared about [the deceased] when they were alive and saying that is a way of saying they are sad—Not that a coffin or urn is a better place to be.”

Prepare your kids for how others might express their loss, and give examples of appropriate responses in advance to lessen their anxiety.

In conclusion

It’s natural to worry about how you can provide support to your children as they cope with bereavement. Kids with autism, especially, may need extra support when coping with loss.

Be patient with your son or daughter and yourself. Ultimately, we all want reassurance during difficult times, so be open to however he/she chooses to express his/her feelings about death. 

Things may be hard, but provide support as best you can and trust that your best is enough. A parent’s love goes a long way when it comes to healing.

References

CRHCF. (2016, September 25). How to Explain Death to Children. Crossroads Hospice Charitable Foundation. https://crhcf.org/insights/how-to-explain-death-to-children/ 

Sparrow, M. (2017, October 1). Helping Autistic Children Understand Death and Dying. THINKING PERSON’S GUIDE TO AUTISM. http://www.thinkingautismguide.com/2017/10/helping-autistic-children-understand.html?%C2%A0 

Wheeler, M. (2016). Supporting Individuals on the Autism Spectrum Coping with Grief and Loss through Death or Divorce. Indiana Resource Center for Autism. https://www.iidc.indiana.edu/irca/articles/supporting-individuals-on-the-autism-spectrum-coping-with-grief-and-loss.html

Autism Parenting Magazine aims to deliver informed resources and guidance, but information cannot be guaranteed by the publication or its writers. Our content is never intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician with any questions you may have and never disregard medical advice or delay seeking it because of something you have read on this website.

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