— When my grandad died, I didn’t know how to process it. Then I met others who felt the same.
There is an episode of Buffy the Vampire Slayer that I think about often, still as gut-wrenching today as it was when it first aired. “The Body” follows the immediate aftermath of the death of Buffy’s mother, Joyce: her cold face, her stiff limbs; the crack of her ribs when her daughter attempts CPR. It also follows each character’s individual response to grief, a reminder that there is no right way to process death. I cry every time I watch “The Body”, moved by everyone’s outpouring and quiet devastation. But I perhaps relate most to Anya, an ex-demon who is new to human mortality and feeling, and unable to process what has happened. She seems to be clinical, cold even, when asking if the group will see the body. Buffy’s best friend Willow gets upset by this, believing that Anya isn’t in pain like the rest of them.
Anya loses it in response—her first outburst ever. “I don’t understand how this all happens; how we go through this,” she says. “I mean, I knew her, and then she’s—there’s just a body, and I don’t understand why she just can’t get back in it and not be dead anymore! It’s stupid! It’s mortal and stupid!” It’s the illogical nature of death that has shaken her; that death is constant and permanent, as is the pain and need to go on no matter what. The very fact of being human is unpalatable and beyond comprehension to her—and when my grandad died, I felt exactly the same.
I do not handle grief well. Autistic people, much like ex-demons, are often assumed to have no feelings at all—but the reality is the opposite: We often feel things very deeply, on a cellular level that impacts every aspect of our functioning. Because of this, it can take us a while longer to process things, or even just to express them outwardly. Death and grief are no exception.
When my grandad was dying, just weeks before he was due to walk me down the aisle, I thought I had a handle on it. I dropped everything, avoiding work and most people, so that I could take the time I needed to try and process it. It was futile. Death is illogical, and unfair, and stupidly mortal. I know a person is not their body, but when their body dies, they are no longer here, no longer able to get back into it. My grandad was here, and then he was sick, and then I could no longer call him to talk about the birds in his garden. I couldn’t accept it.
After speaking with a few other autistic people, it seems many have faced a similar struggle when processing the death of loved ones, sometimes grieving long before the death itself, in hopes of better preparing for it. “With my grandad I grieved years before he was even ill, when [it was] just a hypothetical,” Reb, 23, told me. “When I was a kid I imagined what it would be like when he died. I knew it was inevitable and something I couldn’t control, so I tried to prepare for it.” With my grandad, I’d done the same: His death was my greatest fear, and I wrote about it constantly, in hopes it would help lessen the sting when it inevitably happened.
These attempts at preparation for future heartbreak, often at the expense of present joy, make sense to me. I read once that autistic people experience all time simultaneously: the past, future, and present, all wrapped up in the current moment. I can’t let myself enjoy the fact that the people I love are here, because I know one day they won’t be. It’s like an unconscious self-preservation. Sitting at dinner with my grandad before he died, I would hurtle through time, the inevitable pain becoming stronger the closer we got to its reality. I knew, even then, it would destroy me.
Autistic people experience everything in our bodies to an extreme extent—every sound, every smell, every touch. We often get sensory overload, which can lead to meltdowns and burnout. There are ways to mitigate this. My biggest trigger in public is sound, so I often wear earplugs. I can’t tolerate most fabrics, so I wear cotton. But over the months after my grandad died, a sensitivity stronger than anything I’d felt before crept up on me and made it impossible to do anything. I couldn’t go to restaurants, the gym, or even supermarkets without teetering on a full-blown meltdown. I spent most evenings curled up in a ball playing Zelda, but every day, it got worse, until inevitably, I was in my first burnout in years. I’d completely shut down.
I wanted so badly to grieve well, to process healthily, but my body disagreed. “My autism is getting worse,” is how I put it to my husband, but how I would never want anyone to put it to me. I felt angry, and weird, and mean. I didn’t feel like myself, but I did—I felt like the kind of person I fear I am. At some point, I realized that what I was experiencing was grief, that I wasn’t just angry or “wrong” or struggling for no reason, but that my loss had sunk into my bones.
It was only with time, and some recovery, that I realized this. Tess, 26, told me that she experienced a similar shut down while grieving. “Stressful situations like bereavement can disable our usual coping mechanisms,” she says. “I’m upset about losing this person, so now the floodgates have opened because I’m too fragile to block out sounds and feelings from other things. It makes you want to withdraw, and it’s very isolating.”
For many autistic people, these feelings can develop into more extreme difficulties to function. Anwen, 31, shared that when she lost multiple members of her family in 2019, she became a “sensory mess.” “My short term memory was shot. I have issues with that on the best of days, but I started having to make lists of everything, printing out itineraries, texting myself reminders,” she says. She was used to hiding her sensory difficulties, so she was able to seem fine to those around her, but for months, she was so distraught she couldn’t even eat. “All of my texture issues ramped up tenfold and I just ate chips for a year because anything else made me feel sick,” she says.
Grief affects every single person differently, and sometimes even for allistic (non-autistic) people, that might mean a similar, complete cognitive shutdown. But autistic people, particularly women, already spend a lot of time “masking”: concealing any difficulties they may have with existing in a world not built for them. When we experience grief, this urge only compounds. The subconscious need to display grief in a “good,” appropriate way means that we might not express it at all, and if we aren’t dealing with it privately, it’ll sneak up on us through our ability to function, obliterating any and all of our coping mechanisms.
For much of this year, my first without my grandad, I felt very angry. Seeing litter on the ground was enough to send me into a spiral, my preexisting grief coalescing with climate grief and a general distrust of humanity. Someone FaceTiming in a restaurant? Always enraging, but with my increased sensitivity, enough to ruin my entire night, leaving me curled up at home with the screech of the offending iPhone speaker still rattling around in my ears. I couldn’t look at anyone I loved without thinking about death, without thinking, What is the point? They’re going to die. They could die now. Why build these bonds, spend this time together?
As an autistic person, I am prone to forming incredibly deep connections. I know how to love and how to nurture relationships. But to love someone at all is to anticipate grief, and I don’t have the tools to manage the inevitable loss. I’m not confident that I ever will. But speaking to other autistic people for this piece, I finally feel, if not normal, at least not wrong for how I’ve processed my grief. As Tess put it to me, “Autistic people have the most special bond [with each other], because it’s like you spend your whole life thinking you’re so bad at being a goose, and then you find out you’re a duck.” We are all victims of the same mortal rules, but it is a relief to have found other ducks, and to not be alone in how I experience death in life.
Complete Article ↪HERE↩!