Grief while Autistic

Uh, my grandmother just died. It wasn’t Covid-19. She has-uh- had lymphoma. My mother forgot to tell me she was sick. That sounds strange. She was diagnosed less than a couple weeks ago, maybe she didn’t tell me because I was sick and she didn’t want to bother me. So she, my grandmother, went, really, really fast. But at least she was at home with my aunt.

She wasn’t with strangers on a ventilator.

I’m kind of stunned…

I cried a lot when my mother told me, but she staid on the phone and talked about inconsequential stuff for a while. That’s what she does when I am inconsolable. It works pretty well.

I’m kind of waiting for it all to really hit. Everything feels just a little bit wrong. I tried to watch some television but it was all a little too loud, or jarring in some other emotional way, tried to think of something familiar to watch. Or whatever. Mostly I just feel really numb and off. (Honestly, I’m probably about to eat a shit ton of carbs.)

I haven’t dealt with a lot of grief in my life. Most of my grandparents passed away when I was young or before I was born. My father’s mother passed when I was an adult but she didn’t seem to like me very much at the end. I didn’t dislike her, I loved her and had wonderful childhood memories of her. She was an artist, like me. She was probably a lot like me neurologically, now that I think about it. I just didn’t have a close relationship with her, either. I would say though, that I felt numb then too.


This grandmother was technically my step grandmother. My grandfather’s second wife. She was amazing. We lived near, and for a very short time with her, for about three years when I was around ten. Then we moved to the midwest.

We lived with her in Georgia, at that time. She was this really fantastic southern woman. I wasn’t as close to her as maybe my cousins were, but I did love her very much. She was my mother’s step mother. I know that she loved her too, very, very much.

I can still remember the way she smelled. It was some kind of perfume and powder. Like make up. She was very well put together. Great taste in decorating. There were so many wonderful textures in her home. Grasscloth wallpaper, some kind of velvet couch, the black formica countertop. There was a red cherry print wallpaper in her kitchen too, I think. It actually might have been roosters, I just remember the bright red. She also always had plain strawberry pop tarts. My favorite. Even if I used to get in trouble with her for eating too many (Carbs, remember? My weakness since a very young age. I have a picture of me somewhere eating a heal of bread in a portrait. I wouldn’t take the picture without it.)


I regret not talking to her more as an adult. The insane thing is I asked for her email about three weeks ago and then I got sick. So I never sent her the email that I wanted to. I just kind of forgot about it and distracted myself, writing here on this blog, or binge watching Netflix. But maybe it’s better that way, considering that my mother hadn’t told me she was sick. It would have confused her that I didn’t know. And then it would just be about me, not her. And that’s not what I would have wanted for her.


I suppose this is kind of normal for me. So I wonder, is that an autistic quality, then? I always get numb at the big things. Traumatized by everyday stuff, like protocol and bright lights, but just go blank at life and death. When my son went in for brain surgery, I was just barely there. It must be some kind of protective mechanism. Everything feels slower. And it’s mostly just regret and yearning- hunger, too.

I should have stayed in touch better. But there’s nothing I can do about that now. I’ll just do my best to stay in touch with the people I still have.

There is going to be such collective grief when this is all said and done. Part of me hates that because she passed from something else, it might make it matter less? She won’t be on any list of the dead, but she still stopped breathing. Just like everyone else. It still took me by surprise.

We were sick the same amount of weeks. She got sick, when I got sick. She died. I survived. My mild case of COVID-19 was nothing like lymphoma. I imagine she was in pain a lot longer. She just finally got diagnosed.

My autism is nothing like lymphoma either, but I know what it is to have relief after a diagnosis. For me, it was about knowing who I was. For my grandmother, it was knowing that she was ready to go.

Lipstick. She smelled like lipstick. And roses. I’m not sure if that was from her perfume or from the yellow- no pink, they were pink roses in the backyard. I always wanted to pick those roses but was too scared of the thorns.

When my sister, cousin, and I decided to make our own TV show with a camcorder, she willingly took a part as “Grandmother.” Not our REAL grandmother of course, but the character’s grandmother. I think we were playing orphans? Living in a cool pool house? (We practically did live in that pool house when it was summer.) I’ll have to tell you about that cinematic genius some other time. But I still remember her patiently waiting for her scene, reading the paper on the brick stoop in front of her house. Taking an unscheduled break from her near constant watch of the OJ Simpson trial. She was a news junkie. Apparently, she was watching the news right up until the end, to my poor aunt’s chagrin.

What is it about death, that makes living feel like a betrayal? She wouldn’t want that for me. Why do I feel like I shouldn’t be doing anything right now. That everything is somehow shallow and self-serving, even writing about her. I don’t know.

When you are a late diagnosed autistic… certain memories become traumatic because they were so powerless and humiliating. I have this one memory… we were celebrating my grandmother’s birthday, I believe. I was probably eight or nine. And for some reason, I had a compulsion to get up and hug her like an absurd number of times. I think it was after every gift. Even when they weren’t from me. Probably from the excitement and happiness? It was not socially appropriate, but I kept doing it. It’s one of those memories, that everyone at that table knew how different I was, and it became a little traumatic for me later.

Now, all I can think is that… she hugged me back. Every time. Even though it was strange. Even though it had to be annoying. I mean, she probably was thinking I was such a strange little ranger…

But she hugged me back.

I love you, Grandma Bettie. You will be missed.

2 thoughts on “Grief while Autistic

  1. Holly–Lovely tribute to Grandma. She was a tower of strength. We call them steel magnolias in the South. She was my loving mom and a very accepting person. She was adored and admired.–Mom

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