The first time I saw death was at my great-grandma’s funeral service. I was four years old, and my dad let me wear my shiny black tap shoes. My sister held my hand as we walked into the room where my great-grandmother’s body lay in an open casket. I remember looking at her embalmed skin, wondering how someone can look alive but be completely gone. I expected her to open her eyes or reach out her hand to touch my face. Afterwards, I stood outside the church that held the service and tapped my feet on the concrete, listening intently to my parents’ conversations with other family members.
I wanted to hear more about death. I wanted them to talk about where her mind went, why her body stayed here. I wanted to know more about this place called “heaven” and how they could know for sure that she had arrived. I kept waiting, kept listening, and found that no one in my life wanted to have conversations about death.
Understanding Autism and the Hyperfixation on Death: Exploring the Link Between Autistic Traits and Mortality Obsessions
I grew up as the youngest child of four. Being the youngest with a significant age difference between me and my siblings, meant that I spent a lot of time alone. I was always seen as a weird kid. I loved mounting dead bugs into display cases, putting worms in my mouth (don’t try this at home), and eating daisies at recess. I learned quickly that other kids weren’t interested in having conversations about death with me any more than adults were. It wasn’t until I found out I was autistic in my 20s, that I realized my fascination and borderline obsession with death had actually been a special interest.
Most autistic people have at least one special interest. A special interest is more than just a hobby or something we are casually interested in and often turns into a hyperfixation. When hyperfixation occurs, it can be hard to pull away from our special interests and can interfere with daily life. People who are autistic or have ADHD (there is a significant crossover between the two, often referred to as AuDHD) can experience issues with dopamine, and hyperfixation releases dopamine providing positive psychological effects.
I tend to bounce around in my special interests – sometimes it’s a song I listen to on repeat, or a scientific theory I can’t get out of my brain. Death, however, has always stuck as a main special interest. It turns out, there are many other autistic people who identify with this as well.
Death continued to be inescapable, and my special interest in death became a coping mechanism for grief.
Knight, Sandra, and Vayne Neo are all autistic and have had a special interest in death since childhood and adolescence. For Knight, a longtime friend, a special interest in death began as a deep-rooted fear. “When my parents would leave I would have panic attacks waiting anxiously, having intrusive thoughts and images of them dying and not making it back to me.” He became someone who was comfortable talking about death, often needing the space to process it with others like I had experienced.
Vayne Neo, a TalkDeath follower who we spoke with, had a similar relationship with death as a kid. “Back then it was so mystical and taboo, and I wasn’t allowed to witness or know about it. It made me sort of obsessed with death and afraid of losing people to it, having nightmares about skeletons coming to get me.”
Sandra, another TalkDeath follower we spoke with, has had a special interest in death since high school when she did a report on the process of a human body decomposing. “I lost my mother in 2018, and I definitely feel like my special interests in death helped me cope… I stayed by her bedside for two weeks as she was dying, and I had prepared myself by simply researching what the active dying process looks like.”
Being trans and seeing the violence against us increase every day, I rarely get a break from thinking about death.
Studies have found that an autistic brain may process fear differently than a neurotypical brain. Every time I have experienced the discomfort that comes with the feeling of fear, I have intentionally found ways to process the fear. One of my special interests early in my twenties was rock climbing – I fully immersed myself and my life into the world of climbing purely to process my fear of being close to death.
In the climbing community, I saw friends die every year from climbing and mountaineering accidents. When I became overwhelmed by the inundation with death, I left the climbing community and started my gender transition. As I created more connections with other trans people, I started to see trans friends die every year as well. Death continued to be inescapable, and my special interest in death became a coping mechanism for grief.
Channelling my Grief
The first time I saw someone’s life leave their body, I was working as a caregiver in an assisted living facility. Edith was one of my favorite residents. Even though I’m not religious, I read the bible to her on my lunch breaks and she told me about her family’s history. I saw how deeply her needs at the end of life were rooted in closeness and connection with other people. Her family visited about once a week, and the other caregivers did what was required of their job. Edith became nonverbal about a week leading up to her death, and the day she died she managed to say her last word – my name.
I didn’t realize the work I had been doing at the retirement home was death care. Six years later and months before the pandemic began, I enrolled in Alua Arthur’s Going with Grace Death Doula Training. I wasn’t sure how the training would unfold into a career, but it felt like something I was called to on a spiritual level that I couldn’t explain within the context of capitalism. With an unemployment rate of 85% for autistic adults many of us have to find unique ways of making money, and struggle with burnout if we aren’t indulging in special interests within our fields.
What I learned through Alua Arthur’s program helped me process so much of my own feelings about death. Being trans and seeing the violence against us increase every day, I rarely get a break from thinking about death. However, my special interest has provided me with so many unique tools to process and contextualize death.
“I also have a close but complex relationship with death personally after a lifetime of battling severe mental illness,” says Sandra, “I know both the intense longing for death, and the paralyzing fear of it, very intimately.”
Given the struggle autistic people face with socializing and masking, we are often seen as creepy or weird just for existing. When you add a special interest in death on top of that – something that we are not always able to just keep to ourselves, the more rejected from mainstream society we may become.
As Vayne Neo tells me, “Death is as normal as life, and one doesn’t exist without the other.” As the narrative around death changes to something people are more open to talking about, I can only hope for a future where our special interests are celebrated– even when they’re a little bit weird.