How I grieve as an autistic person

Expected vs. unexpected death

Identifying whether a death was expected or unexpected is important.

As a child, my maternal great grandfather’s death was unexpected because I was young; still, I did not fully understand — because I was young.

Now, I’ve learned to identify the patterns of death, how possible it is.

If someone is on hospice care, they’re unlikely to recover.

This was my maternal great grandmother, who died not too long ago, and my recently deceased paternal grandfather.

My grandfather had Parkinson’s, plus a cancerous brain tumor, had brain surgery, and did not last long thereafter.

None of my paternal relatives watch medical shows, to my knowledge. To them, all they had to do was pray and hope God healed him.

But…my grandfather’s death was expected.

My grandmother’s death was expected, too.

It’s not like they were abducted and murdered, or died in a car accident.

Death was predictable, inevitable.

I make peace when someone’s dying

My grandmother lost her dignity each day she lived after her strokes. Her getting a day nurse while she was able to move about my grandmother’s house, where I also lived, was evidence that she wasn’t going to get any better.

One stroke after another…she had so many. I was 19-20, trying to life my life, figure out my independence alongside a family who penalized me for that.

A cousin knocked on my door and told me that I should say goodbye to my grandfather before I miss that chance. All my dad’s side of the family was there.

I don’t remember what I said.

I spent my grandfather’s last day praying for him to have peace, not suffer any longer. “He doesn’t need to suffer longer just to I can say goodbye. I’m not selfish. Just take him already.”

He was no longer himself. He was clearly suffering. They all crowded around him, kept praying.

After that knock, I prayed again: “It’s okay. You can take him.”

I used to have this weird feeling when someone close to me died or something happened, like a string being cut or dissolving.

I felt his disconnect from me.

I heard sobs and people walking out of the room.

I do not enjoy other people grieving.

I prefer to grieve by myself.

My family’s grief has haunted me my whole life — their grieving my neurodivergent mind, their grieving my abusive upbringing, their needing to cry on my shoulder.

I don’t like other people’s touch like that. I grew up having my personal space invaded by people who felt entitled to it.

It was such a sad fest in his room that I could not even.

Funerals have explicit social rules.

And I’m autistic. I’ve attended wakes. I’ve been to a funeral. I don’t like socially appropriate funeral contexts.

I stayed home to watch my siblings when my great grandmother died, I think. I don’t remember much.

My dad’s side of the family thought I was “so disrespectful” because I chose not to attend my grandfather’s wake or funeral.

They have always leaned heavily towards image, so my not showing up looked bad. Also, my cousin was in jail so that was two grandchildren down.

My not going to his funeral was not in protest for her being in jail and not having that option, but you wouldn’t be completely wrong if you made that assumption.

Funerals are places to cry in black and allow other people to invade your personal space because they need to feel better about their discomfort and apologize for a loss, even if it was expected.

It genuinely doesn’t make sense to me.

I learned not to ask questions when I was little, when my maternal great grandfather died. I was scolded for asking questions about whether he died quickly, what he said, and how he took his last breath.

For asking how they were sure he wasn’t just sleeping.

They shouldn’t have told me death was like “just sleeping for a long time”. Maybe it would’ve lessened my questions.

I grieve death via routine imbalance.

Death does not hit me suddenly.

The loss of someone in my life is not an immediate shock to my system.

It happens when I am going about my days and realize all the ways they played a role in my routine.

I played card and board games with my grandfather.

Helped my grandmother with the gardening and learned it from her.

My great grandfather was the only one who could get me to stop crying as a baby, or so I was told. As a kid, I thought of him fondly.

Trauma therapy in adulthood unlocked memories that taint every childhood memory I have of him. So…I don’t know.

I only know that the routine is where death hits me most. It’s no longer sitting at the dinner table with them. Remembering their usual at a restaurant and no longer needing to order it for them.

Little things that stack up, rather than a closet full of their clothes that remind me.

Because clothes are just clothes, but my routine is sacred. It’s how I go about my life every single day.

I am not heartless.

I don’t express emotion the expected way.

People misinterpret that as me not feeling anything.

“I know you ‘don’t feel’ or anything, but can’t you please [something similar to requesting me to ‘be normal’]?”

My grandfather took his last breath today at 1:50pm. There is nothing to apologize for.

This happened.

I haven’t cried, and I wasn’t in to see his body after he passed. He’s not in it anymore. It wouldn’t have brought him back.

He was in pain; he isn’t anymore.

I feel peace knowing he isn’t in pain anymore.

I will cry and/or feel nostalgic later, when I am going about my day and realize he’s missing from a part of my routine.

By then, everyone else will have moved on and resigned themselves into believing that I am heartless.

My great grandmother passed away 8 September, 2010.

They sort of went the same way, stopped eating nearly a week before.

Watching someone die is hard. I imagine being on one’s deathbed, someone might not wish to be alone.

My great grandmother, Mama Lois, said to me when I was a child, “I don’t want you to see me die.” She died when I left to buy Sonic for myself. On my way, I saw my grandmother driving towards home

I had wanted to make my grandfather the chicken enchiladas he’d loved so much one more time, even though they made me sick. I wish I had played more games with him — every night, like he wanted — because I feel guilty for saying, “I don’t feel like playing games right now.”

However, I choose not to let myself dive into the sea of regret. That’s a straightforward path to losing oneself.

I’m not sad my grandfather has passed away or that I didn’t get to do the things I wanted to do with him again.

I’m sad I won’t see him again tomorrow, next week or next year.

Because I rely on routine, and it has just been disrupted.

I will adapt — I’ll have to. But it will not come easily, and it won’t happen without mourning the loss.