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Death and Autism

Posted Nov 22 2010 7:40pm

There are many things that make life difficult when you have a child with autism.  This month, I had the unfortunate task of explaining the death of a loved one to my children.  This was hard enough to do with my typical child who had great difficulty understanding what was occurring and was clearly upset. My child with autism had much more difficulty with processing it.  The emotions that accompany death are not cut and dry. Different people react differently.  Imagine trying to navigate that when you have a social disorder. Clearly not fun.

Tomorrow, I will do a fantastic post about my wonderful father in law who lost his battle with cancer recently.  While we knew he had cancer, his death was quite sudden.   Both children knew that Grampa was sick.  Both children visited him at the medical rehab facility and went to chemo with him on Tuesdays. But he had been feeling and acting better in the days before his hospitalization.  When we came home on Wednesday to tell them that we were bringing him home with hospice and that he was going to die, Madison was able to make the connection that we needed to visit him often because we would not see him anymore when he died. She was sad and crying.  Logan looked perplexed at first.  He clearly didn''t see the connection. 

He was upset but didn't really see the need to go visit him the next day.  He was simply compliant when we mentioned that we would be spending the next few days at Grammy & Grampa's house.  He was excited to talk to Grampa about the garden and to get started.  When we mentioned that Grampa would be too sick to do his fall garden, he was distressed about not being able to do the garden with Grampa.  He then became excited when Michael mentioned that Cody , our nephew, would be there to see Grampa as well.  He wanted to play xBox with him.  It simply never occurred to him that Cody would be there to see Grampa.  That is not what happens when we visit and the other grandchildren are there.  He had trouble adapting Thursday evening. I could see the difficulty processing it in his eyes.  We talked for awhile about how it would be different for awhile. We talked about how it would be different when Grampa was gone. 

He stimmed A LOT that night.  Logan has taken to flicking a Sharpie or pen in his hand back and forth.  It is quite clearly a stim for him.  He zones out and makes strange noises.  I usually take the pen from him UNLESS he is trying to calm himself.  I let him keep his pen that night.  It was obviously helping him to regulate the change in routine.  Did he look odd? You bet he did.  Where some family members less than forgiving of his behavior?  You bet.  One of the first things you learn in autism is how to have a thick skin.  I had to pray for grace and strength that night for sure.

When Grampa died the next morning, Logan cried.  Was he sad about losing Grampa?  I think he really was sad at the thought of never seeing Grampa again.  BUT I think he felt more sad at seeing Michael and I so sad and crying.  It pained him greatly to see me cry.  Unfortunately, he couldn't understand why I would be sad. I had to verbalize my pain and anguish for him to understand.  He needed me to self talk my feelings and verbally work things out for him.  I was too emotional to do it at times.  There were times when for my own mental health , I let him stim and check out to the safe world of autism.

Was it good for him to do that?  Probably not.  But there are times when the black and white world of autism conflicts with the real world.   There are times when I have to take my own emotional well being in to account first.  Let's face it.  Autism stinks.  Death stinks.  Put the two together and it just sucks.
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