Grief and Autism

It’s been just over a month since my grandmother died.  She lived a grand total of 100 years and 2 weeks before she took her last breath.  In all honesty, I am glad for her.  She has been ready to transition to the next realm for years, if not decades.  She buried 2 husbands, 4 of her 5 children, and a granddaughter. There’s a downside to living a long life. But, no matter how many fantastic or sorrowful years a person lives, when you love them and they die, you miss them and you grieve.

I got the news on a Sunday morning while I was waiting for Cub to finish a voice lesson and Jon was home with KBear and Chimp.  Before getting the news, we’d already planned that KBear and I would go shopping for summer clothes that afternoon.  And here is the first way in which Autism altered the traditional, neurotypical family-style of grieving.  Changing the schedule in such an enormous way after my daughter already had to grapple with the loss of Grandma Farm would be asking for an epic meltdown.  After talking it through with Jon, we decided that the option to most likely yield a successful outcome would be to stick with the plan as scheduled. 

A lot of me just wanted to have an easy day at home letting the reality sink in a bit, and truthfully, if that’s what I REALLY needed, that’s what would have happened and Jon would have dealt with the fallout.  And, if KBear were neurotypical, that’s what I would have done, without question.  But having a neurodiverse family member changes everything, even grief.

So, Jon told Chimp and KBear the news, I had time alone to cry while Cub was finishing his lesson and then I told him when he came out.  I dropped him off at home, hugged Jon, and KBear and I were off to shop.

Driving along I confronted the second way in which Autism altered my grieving.  The black-and-white-not-always-cognizant-of-how-her-words-will-effect-others impact of Autism.  KBear mentioned that Chimp didn’t seem to be too concerned about Grandma Farm’s death.  To which I said, “Well, he’s pretty young and hasn’t really had to deal with the death of someone close before, so he just doesn’t quite understand it yet.”

And Autism responded, in a very matter of fact way,“Yeah.  He doesn’t know that you’re just going along and then BAM! Someone dies and you never get to see them again ever.”

Ugh.  Cue the tears from me and the confusion from KBear.  Keep in mind that I’d had a grand total of 2 hours to digest my loss at this point.  I could just nod and mumble an “mmm-hmm”.  She quieted, noticed I was sad (yea!  A victory!) and then asked me if I was sad.  I said yes and something along the lines of it wasn’t her fault, I’m just really sad that I’ll never get to see Grandma again.

But there it is.  The blunt directness that can be part of Autism.  It doesn’t go away just because we’re not in the mood for it.  It doesn’t quiet just because we’re sad and vulnerable.  In fact, it may raise it’s direct voice even more loudly at those moments.

As parents of children on the spectrum or with any other neurodiversity, we simply need to accept that these moments will come.  We also need to accept and allow the impact these moments have on us. 

One of the biggest misconceptions I hear from parents is that they should protect their kids from adult emotions.  Grieving parents constantly ask me how much they should or shouldn’t show their children, whether or not children should attend memorial services, how to shield their children from the raw pain.  My response?  Show it all, ask your kids what they want to do, and don’t shield them from pain.  When we’re grieving we have the opportunity to show our children how to grieve well.  In order to show them, we have to let them in.  They have to see our grief, which actually gives them permission to show their emotions, as well.  Yes, we also want to reassure them that they will be taken care of.  We want to teach them that we might break down sad one moment, but that we’ll be okay in the next and their needs and our needs will still be met.  Give them permission to grieve.

And give them permission to ask questions.  Often their questions will be blunt and may sting, particularly when they are trying to sort out abstract concepts in concrete ways.  Reassure them that even if you cry after they ask a question, it’s just because you’re sad, not because they asked the question.  Do your best to answer their questions to whatever depth they need and always answer accurately.  Tell them that their loved ones body stopped working.  Explain what happened if they ask.  Our kids need the freedom to ask and be answered.

And, the kicker is, that when we are that open with them, when we allow full, raw grieving, we also allow Autism to bring us healing and increased peace.  Because the other side of Autism, is that it can be a very visual disorder, meaning my daughter thinks in pictures.  She makes sense of the world and abstract thoughts through her pictures.  And she has a spiritual awakening and awareness that is beyond me.  Many of our neurodiverse kids do.

A little backstory, KBear was 4 when my dad died.  The kids called him Banka.  I was pregnant with Chimp at the time, only we didn’t call him Chimp, we called him Baby Thing (in the most endearing way).  We were talking about Banka and our spiritual beliefs and KBear said, “Yeah, I can see Banka.  He’s up in heaven swinging with the monkeys.”  Seemed weird at the time, until months later when I was holding my little Chimp and that moment struck me.

Back to the more recent past.  Because we’re open with our grieving, a day after I learned the news of my grandother’s death, KBear said, “mom, I saw grandma farm.  See there’s these dark woods with lots of trees and a narrow path.  At the end of the narrow path is a doorway that has this amazing light flooding out of it.  Banka, he stopped to play with the monkeys in the trees before he went to that doorway, but Grandma?  She saw the light and she just took off running!”

This image will always bring me peace and joy.  This image is the bonus of grief and autism.