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Explaining Death to an Autistic Child November 12, 2008

Posted by hopeauthority in Autism, Children, Family, Parenting, religion, special needs.
Tags: , , , , , , , ,

 I recently read a newspaper article authored by a well-respected spiritual leader in my community that addressed this issue as it pertained to a nine year old autistic child who lost a grandparent. I was intriqued at the thought of him providing us with some guidance on just the right way to explain this delicate mystery to autistic children.

According to him, you handle it the same way you’d handle the topic with a “typical” child. At first I felt “jipped” out of some deep expert advice…like the good rabbi had copped out. But then I realized he was right on with his response.

We know better than anyone that our kids (for the most part) understand far more than people give them credit for. Maybe it’s because many autistic children struggle with language and have limited or no verbal capabilities. People forget that they not only hear, but they also understand what you are saying in their presence. And many people tend to underestimate just how much these kids do know.

This particular rabbi beautifully explained in a non-denominational way, that many children can understand a concept of the body and the soul. (I, of course, am about to butcher his beautiful essay in an attempt to summarize it!)

Okay. The body and the soul. The way to explain why they won’t see the physical person again on Earth is because the body dies and goes back to the earth. (This explains the funeral/cemetery/cremation.)  And the soul lives on and goes back to (insert your God of choice) where it gets to see all the rest of the family who’ve died before them (like a reunion to be happy and less scared about).

So, as the parent, it is your job to determine how much of the above description your child can handle. I guess we just take our child’s developmental age into account when deciding. Otherwise, the same general rules apply for our kids as for typical kids.

I’m not sure exactly how well my son would understand the above explanation just yet, at only six years old. Death is certainly one of those tough concepts to explain to a kid of any age, especially if the departed was someone very close.

That brings me to another tough concept: thankfulness. For a Thanksgiving project in school, ‘C’ was sent home with a yellow construction paper heart on which he was to write a word depicting what he was thankful for.

After all the attempts at priming him to answer with the altruistic “my sister, ‘N'” or “my family” like most of his peers will no doubt bring in on their hearts, he repeatedly…and somewhat emphatically…answered “Presents!”  So, with a sigh on one hand…and a laugh on the other…I encouraged him to write “Presents” on his heart. After all, it was his choice. His informed choice.

Now there’s something to be thankful for.



1. Carolyn - November 12, 2008

I retired two years ago after eighteen years of teaching severely disabled (all types of physical and mental disabilities) students. Autism…like most cognitive disorders runs a continuum from severe to moderate. But more severe students with any cognitive disability really struggle with abstract concepts…the spoken word especially. I had a Down Syndrome student who became very upset after going to her uncle’s church and hearing that Jesus’ Father “killed him.’
I tried for days to help her but she remained very disturbed. Parents were not able to clarify her confusion. Finally, I did what always works….pictures instead of words. I used a graphics computer program which gives the representative graphic for each word typed into the program. I explained the plan of salvation, pictorially with animated-like characters, made it into a book….sent it home with the student for her parents to read to her. IT WORKED! She came to my room next day and was no longer disturbed. She finally understood that Jesus is alive! Using pictures and the very best way to explain things or to communicate with mentally challenged persons. Words are very, very, very abstract. Pictures are concrete. Programs can be purchased for use in this way. I’m actually considered a series of pictorial children’s books which might help in spiritual areas and areas of other emotions. Every person, especially the most innocent, needs to know that God loves him or her individually. They need to know He is their best advocate!

2. hopeauthority - November 12, 2008

Carolyn: How brilliant!!! What a great idea…I just had one of those “forehead- slapping A-HA” moments when I read it. Of course pictures would help! So many times, we use social stories to help our autistic children understand and cope with challenging situations.

Thanks for sharing a great idea. And let me know when your books are ready!

3. tiredmama - November 13, 2008

The idea of those books sounds great to me, too! Wonderful!!!

4. Worried..... - January 5, 2009

Any advice about the funeral? To take or not take? I do realize that my son (higher functioning) is already very upset that his nana is going to die soon and I explained that but still he was VERY intense in his response. I am just worried that he will not be able to think of ANYTHING but the final funeral acts as part of her. He tends to dwell on those final things with the loss of pets etc. He has visited her in the hospital and knew she was ill but recently we had to tell him that she will not get better. We live in a duplex and they are downstairs from us so he was use to her always being around.

I saw someplace else about doing some other kind of grief ceremony for kids if they don’t attend the funeral. I am leaning towards this but I am not sure.

The idea of pictures for a younger child is fantastic…I explained my mom’s illness (cancer) by telling him to think of when I make bread the I proof the yeast and it grows very fast. Our bodies are not ment to do that but for some reason Nana’s body had parts that did and it is very hard to stop them growing to fast, just like the bread until it goes into the oven won’t stop growing. That worked (he thought he got her sick).

Thanks for any ideas!

hopeauthority - January 5, 2009

So sorry to hear about his nana. I think you’ve really thought this through and its great that you’ve had some time to prepare him. If you think…based on past experience with his pets dying and his intense responses…that he won’t get past those final visions, I’d skip having him at the funeral. Remember, even if it went well with him there, you’d still have to spend almost all of your time focusing on helping him through it and either you or your spouse may need some support too. With me, I try to factor in the worst case scenario when I decide whether or not to bring my son to potentially difficult things…since more often thatn not, that’s the scenario we get. A funeral is a heck of a place to have a meltdown. Plus, if you think that that’s how he’ll remember her, well…
A different grief ceremony may be nice. Maybe focus on happy memories. Maybe let your son help you put together a picture board (either for the funeral or after) where he can remember fun times with nana. Maybe buy a bunch of latex helium balloons and write simple messages to nana after she’s gone and go to a favorite park or place in nature and release them to her one at a time, reading it aloud. Then lay there on the ground and watch them fly up to heaven until they are out of sight. That even works with a single balloon if he wants to tell nana something at some point after she is gone. Or get one (or make) a stepping stone or rock marker and plant a little garden of flowers or plants she liked where you can sit and think of her. Happy stuff. Stay away from the sad stuff. Just some thoughts. Good luck. Let me know how you make out.

5. Worried..... - January 15, 2009

Thank you…we opted to have a private time at the funeral home with the casket closed. It was ROUGH! He made a note for her and drew a face that was sad with hearts for her. Also he saw a cookie at the store and said she needed that and got a flower too. Then we gave those to the funeral director to place with her (we did it later) and our daughter came up then and it broke him when she became upset so he stopped and said it was ok to her etc. I think I would have skipped that all together after it ended up me having to restrain him a great deal outside. He wanted to have us open it so he could hold her hand. I was glad we stuck to our guns and said no we could not open it. We showed him where she was going to be placed (her box that is) and now on Sunday we will take him to see the grave. We skipped everything else then on since it was just too hard on him (and us…I am still sore)
I like the balloons…perhaps we will do that when he wants to send her a message. Right now he heard a whisper in his ear after we told him last Friday and it told him to not be so sad…it was ok. That helped for the time until we got to visiting. He is asking people if they miss nana etc allot…(family that is) but thankfully we all get that is how he is.
Not a fun task…harder then a regular kid by all means.

hopeauthority - January 16, 2009

Wendy: So sorry for your loss. What a heart-breaking story. I love, love, love the cookie idea he had. How sweet and thoughtful. And wanting to hold her hand. It is so nice that he is verbalizing his feelings. I think the private time with the casket closed was much better than public with it open. And even though seeing his sister cry set him off, it also showed him it’s ok to feel sad and cry over the loss, and that he is not alone in feeling so sad. (Not much consolation for you and your sore arms, though…)
As for the grave, does your cemetery allow you to leave anything there? If they do (and maybe even if they don’t) you can ask your son if he’d like to draw a picture or write a note or make a trinket or leave a photograph or leave a flower on the grave. I am not Jewish but have stolen their beautiful tradition of leaving a small stone on top of my mom’s headstone whenever I go visit. And my daughter does too…she likes to search for the perfect one. And my son will someday when he “gets” it, though he never met my parents.
Glad for the whisperer. Hope time will help him (and you), but it sounds like you handled it really well for him.
Don’t be a stranger.

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