Processing death as an autistic person

At my cousin's funeral the week before I turned 16, I was fixated on my anger about the people approaching his casket, decked out in Christian regalia, saying prayers that reflected a religion he didn't believe in. I was aware that it wasn't socially acceptable to confront these fellow mourners on what I felt was selfishness, so I looked at his corpse and rolled my eyes as if to say "Do you believe these people?" in order to have an outlet to express my disdain. No one else seemed to mind, and I didn't want to draw attention to myself. Nonetheless, when I started to tear up midway through the service and a relative exclaimed, "Oh, she's finally crying!" leading several people to surround me with tissues and pats on the back, I felt painfully misunderstood. And when I was chastised for my refusal to approach the casket to "pay my respects," I wondered if that meant I didn't love my cousin as much as others did. When I got home, I Googled "How long does it take for a body to decompose after burial?" With this information, I created a rule that I would wait this long to receive a "sign" from his supposed soul, and that if there was no sign, it would mean heaven was not real. Unknowingly, I was coping with unknowns by manufacturing my own structure around them. Accurate or not, any rules felt better than none.

We should not need a diagnostic label to accept that grief looks different for everyone. If I'd known I was autistic at 16, it's possible that I would've been left alone. Then again, it's possible even greater emphasis would've been placed on teaching me how to mask correctly. Furthermore, grief does not have to follow death, and that's true regardless of neurotype. Some people experience little drips of grief in the form of existential anxiety every single day and thus feel less of an impact when death actually happens. Some people lean on logic and science without a pull to the spiritual or emotional. Some might focus on macro-level themes about mortality more so than on memories of their relationship with the person who died. The experience of death is filled with expectations and "shoulds" that are impossible not to internalize to some extent. It's more commonplace than ever these days to say "Depression doesn't have a look" or "You can't tell if someone has an eating disorder by looking at their body," but it's rarer to hear the same idea applied to grief. Perhaps that's because people often feel shame about grieving too much and so it seems there's a greater need to reassure people they can cry as long as they need to than there is to reassure people that if they don't cry at all, they aren't "bad." Accepting our coping styles or absence of a need to cope is hard work.

In the same way I feel frustration when parents of autistic children lament that their child will never hug them and equate their differences in demonstrative affection with love and attachment, I feel frustration at the implication that things like visible affect, degree of kinship label (e.g. third cousin or friend vs. daughter), and length of time taken off of work should be a metric of closeness with the deceased. It seems that the societal drive to quantify the impact of someone's grief experience is a byproduct of capitalism, and as is the case in so many other areas of the disabled experience, we must prove that we have a good enough reason to struggle if it is outside the norm. There is no better demonstration of this than the Prolonged Grief Disorder diagnosis that was added to the latest edition of the DSM in 2022. "Symptoms" include depression, anhedonia, numbness, loneliness, identity disturbance, difficulty managing interpersonal relationships, rumination around and non-acceptance of the loss, and a strong desire to reunite with the deceased. If you're wondering "What makes that a disorder?" you're in good company. A person can receive this diagnosis if they meet criteria for a minimum of six months. That's how long you can fantasize about seeing your loved one again until it's a disorder, so hurry up!

Autistic people often experience nonlinear, cyclical, or delayed-in-contrast-to-allistic processing, but that's of anything, not just loss, not just abstract concepts. And every autistic individual may be different on what themes are processed in unique ways for them, so we can't make blanket statements like "this is what it looks like when autistic people grieve."What might appear to be stuckness might actually be the gears in motion at a pace that doesn't fit neuronormative standards. It might be revisited, looped, or re-triggered in ways that allistic timelines don't capture. None of this is grounds for pathologization, yet certainly it makes autistic folks more likely to receive this PGD diagnosis.

Criteria for what makes grief disordered are built around allistic assumptions of social expression: that grief is shared, outwardly processed, and socially integrated. Many autistic people grieve in solitary, intellectualized, or sensory-driven ways. We may avoid rituals that feel performative or overwhelming. When my mom passed away, far more than any emotional experience, I was dreading the small talk with extended family and the pressure to give a euology that glossed over the rocky, imperfect parts of our relationship in favor of warm, fuzzy memories, lest I be misperceived as "speaking ill of the dead," a rule I had previously learned the consequences of breaking the hard way. Divergences like this are likely to be misread as avoidance, detachment, or impairment.

Autistic traits like monotropism, repetitive behaviors, alexithymia, and affective differences might also overlap with markers of PGD, like "difficulty moving on" and "emotional numbness." What is adaptive for an autistic nervous system may be misclassified as a symptom needing treatment.

What do autistic people actually need in the face of death, then, if not to be funneled into interventions that aim to extinguish, shorten, or "correct" our processes? The answer isn't all that different from more general neurodiversity-affirming supportive strategies: sensory regulation, alternative rituals, clear and explicit explanations free from euphemisms, and ongoing space for remembrance that doesn't have a deadline attached are all options to put on a loved one's menu - just remember that none of us will feel supported by the same things.

It's worth noting that most of the resources that exist currently to support grieving autistic people are targeted toward children and/or folks with co-occurring intellectual disabilities. The focus seems to be on understanding what death is, as though something so incredibly vast that has been philosophized on for centuries can be summed up in a picture book. In my own experience, infantilization has felt like being kicked when I'm down. While I found comfort in consuming media on mortality themed, especially when involving my Disney special interest (shoutout to "Coco" and "Soul" for bringing topics like leaving a legacy and the meaning of life into the mainstream), this was because I sought them out on my own accord, not because I needed everything watered down.

What does exist for adults reflects the mental health field's surface level understanding of the autistic experience of grief - warnings that the smells and sights in funeral homes might overwhelm autistic people and we should be given social stories about what to expect. Sure, and what about when an autistic person with executive functioning challenges is the sole executor of their parent's or partner's estate? What help exists for an autistic person they don't have the privilege of going slow without consequence? How about the meltdown in the funeral director's office when given twenty choices for an urn? What do we do when we have to choose between returning to work the day after our beloved dog's death or losing our job because the intensity of pet loss is not recognized by corporate's bereavement policy? There is no guide to navigating the things that make death difficult for anyone, let alone the extra layer that autistic people face. It's up to us to take what feels applicable and leave the rest without internalizing what "should" be. And that in itself adds an additional burden on top of the original source of grief.

Perhaps the most obvious disruption that death causes for all people that could be reasonably expected to be exacerbated for autistics is transition. Many autistic people build strong attachments not only to people but also to routines, places, objects, and roles that anchor predictability. Loss destabilizes not just the relationship but the entire scaffolding of daily life - the rhythms, sensory cues, and relational rituals bound up with that person or role. For allistics, grief may center more on emotional attachment, but for autistics, it's often that and structural disorientation simultaneously - a double whammy.

Grief is inherently a liminal state (neither the "before" nor the "after"). Not knowing what comes next, how to orient, or what routines are safe, in combination is a setup for dysregulation. Where allistics may eventually adapt more fluidly to change, autistics can experience a lengthy period of disequilibrium when the nervous system resists the uncertainty of transition.

Additionally, autistic relationships often involve deep, focused bonds with a few people or in unconventional relational structures. This can make loss feel heavier because the grieving process isn't buffered by a broad social web or casual support network. As a result, autistic grief is often less diffuse and more consuming.

On the cognitive side of things, autistic brains commonly replay, loop, and ruminate. Rather than grief moving in a neat five stages, then, it may recur in cycles, triggered by sensory of associative reminders, and even be evaluated as excessive or dramatic from the outside looking in, especially if the individual doesn't have the words to explain the trigger. We are more likely to grieve in a spiral, not a straight line. To be fair, the linear "stages" model had recently been adapted when I took my death and dying class in grad school to acknowledge that most people, regardless of neurotype, do not experience denial, sadness, anger, bargaining, and acceptance and then call it a day. Most people in the last ten years have come to understand that grief is messy and intend to make space for that, but anecdotally, I still see a threshold upheld; a "enough is enough" point.

Many autistics process grief in concrete, detail-oriented memories, while allistic grief tends to emphasize broad narratives and symbolism. When my mom's hospice social worker called me the day she died, she attempted to offer comfort by recalling her as a "sweet woman without an unkind bone in her body," and that immediately triggered what felt like a contrarian response at the time: a flood of visual memories of times when she had been unkind to me. Not exactly the sort of thing you want to recall at a time like that. Autistic memories may be more discrete and fragmented, and because each fragment holds weight, more persistent. The interaction of allistic and autistic memory processing differences can cause triggering clashes and conflict. In each instance of death I've experienced since adolescence, my immediate instinct upon receiving the news was to reach for a photo album, scurrying to collect every physical shred of evidence they existed as if it would disintegrate if I moved too slow, and to compile it all into a slideshow presentation. This was criticized as unimportant, a low priority, or deflective by others, but it retrospect I can say it was the thing that brought me the most comfort: concretizing what is left over (when the only other concrete thing is their remains), brought a felt sense of control over the lasting impact of their life.

Honoring autistic grief means recognizing it isn't a sign of being stuck but instead a different way of carrying love and coping with change. When we stop measuring grief against a neurotypical yardstick, we make more room for every kind of mourning to be valid.