Death is subject that is never easy for anyone to cope with. Understanding death can be extremely scary for any child. Not being able to see, talk, or hug a loved one again can be completely overwhelming and confusing. But for autistic children and adults, it can be completely hard to understand. Understanding and coping with loss can be even more difficult for children with autism spectrum disorders.
Autistic children and autistic adults are normally very routine-oriented and any form of transition can be extremely rough. When change is necessary, as much planning in advance as possible is ideal for our routines. So as you can imagine, the death of someone close truly upsets our routine as well as causes emotions and behaviors we are just not used to.
With life, death is inevitable. Understanding how to help your child comprehend death, the emotions and expectations around it, will make things go a tiny bit smoother for everyone. Below are some ideas about how to help kids with autism understand and handle death.
Explaining death to an autistic child:
In my life, I have dealt with death quiet a few times. When I was growing up, autism was not commonly diagnosed (especially in girls). My parents always spoke to me in an adult words (no baby talk), and I couldn’t be more thankful for that. The use of literal and concrete words made things much more understandable for me,
The first time I ever dealt with death was when my grandmother passed away. It was just a few weeks prior to my sixth birthday, and very unexpected at that. I remember crying for a short while, then crying again on our way to the funeral when I saw my dad cry. His tears upset me even more than my own feelings, it was very overwhelming to see him cry when I hadn’t seen that before.
From there, I did not cry on my own accord again. I was extremely close to my grandma (seeing them every Saturday of my life up until then). Even at such a young age, I felt no need to cry again. I had an understanding in my own mind that I knew my grandma would not want me sad.
I remember the confusion this caused my cousins and my cousin Junior (age 8 at the time) getting mad at me because I was not crying. Though I explained to him that grandma would not want us sad, he could not understand why I was not crying. This resulted in him telling me that I didn’t love grandma because I wasn’t crying.
As you can imagine by the fact that this is engraved in my memory, this was very upsetting to me. I saw death as very concrete. I understood that her soul was no longer with us and all that remained was a body. The only part that ever confused me was why others responded to her death the ways they did.
Helping a child with autism through loss and grief
Even though my parents did not have the resource on explaining death to an autistic child back then, they did quiet amazing all considered. Since then, I lived through several other deaths and I have learned my own grief cycle. There will be the crying that come with the initial news, then a second smaller spell, then the tears stop. Even at a funeral, I won’t cry. Not because I no longer grieve, but solely because that is just my process.
So from that story, let’s pull together the Five Strategies for Helping an autistic child with the loss and grief of death.
Use very concrete, clear descriptions when it comes to describing death. As you may have already figured out, those with autism speak and think very literal. We all want to make things easier, but baby talk and sugar-coating it will make it much harder for an autistic child or adult. Explain that their body was not able to work anymore, or unable to be healthy anymore.
You may have to reiterate that they will no longer see grandma anymore. We are christian, so my parents explained to me that through death, her soul had moved on but the body had remained and was not longer grandma. That is was her earthly shell. For me, this explanation helped me to grieve her loss. This may or may not work for your child. The important thing is for you to remind them that they can ask you any questions and you will do your best to answer them.
Explain Other’s Emotions
I had a basic understanding that people would cry and be sad. What I did not know, was how to be accepting of other’s emotions. I am sure my cousin’s side of that story may be quiet different. All he saw was me acting as if nothing had happened, not showing what he felt were appropriate emotions.
Some people are able to talk about the deceased person, while other’s will not be able to handle speaking their loved one’s name for a while. This goes the same for those with ASD. The best way to explain emotions is “Every one deals with death differently, all of those ways are ok.”
Grief Is Different for Everyone
Just as others may have different emotions during the funeral/viewing, so will we all grieve different. Your child may grieve for a very long time. There is also the possibility that your child (like myself) may grieve only a short time. That does not mean their love is any less, and should not be looked down upon. We all grieve different and need to accept that process is different for everyone.
Helping a child with autism through loss and grief is not an easy process. That being said, one of the biggest mistakes that I have heard is preventing the child/adult with autism from attending he burial process. Each person is different, so their amount of involvement may be different but does not need to be removed. Just as a neurotypical person needs to be involved to understand the finality of death, so do neurodiverse individuals.
This does not always mean taking them through the whole process of the funeral. I was able to handle the viewing but even at 40, my older brother was completely unable to view our grandpa who had passed. It was just too much for him to handle.
Some may be able to see the body during the wake, while others do better just by seeing the casket buried. Explain the process and routine of the funeral, and let them tell you how they feel.
Everyone grieves differently, and that includes the amount of time spent grieving as well as times that it happens. It is not uncommon for an autistic individual to process a death much later than others. This can range from days to years. Understanding this will help you support for loved one through their personal grief process.
Check out these resources for explaining death to an autistic child
Books For children:
- Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum
- Understanding Death and Illness and What They Teach about Life: An Interactive Guide for Individuals with Autism or Asperger’s and Their Loved Ones
- Help Me Say Goodbye: Activities for Helping Kids Cope When a Special Person Dies
- Lifetimes: The Beautiful Way to Explain Death to Children
Books For Parents:
- Autism and Loss
- How People with Autism Grieve, and How to Help: An Insider Handbook
- Helping People with Developmental Disabilities Mourn: Practical Rituals for Caregivers
- Lessons in Grief & Death: Supporting People With Developmental Disabilities in the Healing Process