How does grief feel to you?
Kirstine: Most people are familiar with the phrase "time heals all wounds," but that's not how I experience it. I don't feel that the wound gets smaller with time, but rather that it just becomes different. It's as if I started with a massive skull fracture where blood was gushing out. Everyone around me could see it and was worried. But today, the wound is no longer visible. There's no blood, but it's been replaced by a great pain in my head. Right when I lost my mother, everyone understood how incredibly difficult it was for me since we were so close. But the grief is still there. It seems like everyone else has forgotten or has an idea of how far I've come or should have come in my grief. But my pain is still there. It's still just as intense, but different. Right when I lost her, it was the surreal thought that I would never see her again, hear her again, or feel her again. Those thoughts are still there.
I have grown a lot, and there are many things I can do now that I couldn't do back then: go to the movies, eat at a café, or take public transportation. Things I would give anything for her to see and experience with me.
Over three years have passed. But I still get a lump in my throat; I can still feel tears welling up just from sitting here and writing this. People always talk about it getting easier. But when? After 5 years? 10 years? I will constantly evolve, which means there will constantly be things she won't see and experience. "She would have been so proud of you; you're doing so well" - sentences like these are well-intentioned, but they only make the lump in my throat bigger.
How do you experience grief impacting your daily life?
Kirstine: Grief feels like a constant. It's not constantly present, but it's constantly there. Big things, small things, new things. Anything can trigger a waterfall of tears, sobbing, and a sense of unreality. I can be sitting there feeling great, but suddenly, it's just there. I recently went to the movies with my older sister, and we watched "The Marco Effect." Suddenly, in the middle of the movie, I was overwhelmed with emotions: Mom loved these movies, especially "The Keeper of Lost Causes." Just think, I'm sitting here in the theater. I actually enjoy the new movie, and I choose to watch it voluntarily. I even sought it out. Mom loved going to the movies, but it took a lot to convince me to join her. I struggled so much to push those thoughts away and get back to "just" enjoying the movie.
Special occasions are also tough for me. But also going to the beach on a sunny day, picking out my favorite candies at a candy store, or watching a good movie. Out of nowhere, grief hits me in the gut. It's constantly with me. Sometimes it weighs 20 kilograms, and other times it's as light as a feather, but it's there. I also find that I can't express it. Only to those closest to me, because they are the ones who know the relationship I had with my mother. But it's difficult to tell others because they assume it just happened and can be surprised when they find out it's been a couple of years.
What do you do to cope with your grief?
Kirstine: I cry, wail, sob; it needs to come out, preferably as quickly as possible. So if I'm at home, it can look quite intense. I don't do it if I'm out, if I can control it.
I wish I could visit my mother's grave more often. But she is buried there. I also talk about her a lot because I need to remember her. I remember her vividly and clearly. Her smile, laughter, and voice. I remember her so clearly that she's almost right there - oh, how I would do anything for her to truly be right there.
Do you think grief is experienced differently by those who are bereaved with autism compared to those without autism?
Kirstine: Grief is a strange thing, and it can be experienced in so many ways. I find it difficult to imagine that people with autism experience it differently, considering how differently other people already experience it. Because who have they lost? When? To what? Some experience anger, others cry, and some feel nothing special. Some love visiting the grave, while for others, it means nothing. It also depends on who is left behind. Who are the bereaved?
Before my mother passed away, I heard people talk about how grief was difficult for those who hadn't experienced loss themselves to understand. To that, I can only say that it's just as incomprehensible for us who have experienced loss. I don't always understand others' grief, nor do I always understand my own. Because we haven't lost the same person, and we haven't had the same relationship with the person we lost.
Do you have any advice or thoughts you would like to share with other bereaved individuals with autism?
Kirstine: It's YOUR grief, and it can NEVER be wrong. I know that for many, it can be challenging to have a grief that doesn't match everyone else's around them, but that doesn't make it any less valid. People always talk about how wonderful it is to be different, but they tend to forget that when it comes to grief. I remember a family where they also lost a mother: the father and the eldest daughter found great comfort in visiting the grave, but it meant nothing to the son who preferred to stay home. In this case, the son should have been allowed to do so from the beginning because even if the others found comfort in visiting the grave, you can't force the boy to find comfort in it as well. So, remember that.
There's no right or wrong way to grieve, only different ways. Just like being autistic, it's also different from the norm, but that doesn't mean you're wrong; you're just different.
How can your loved ones best support you in your grief?
Kirstine: Just be there for me, listen to me, and hold me. I need to talk about it and cry over it. I need day trips to the grave. Fortunately, I grieve in a very "classic" way. I get sad. I cry and say, "I just miss her so much." Fortunately, that's something my partner and my sister, who have both become experts at comforting me and allowing me to express my feelings, can easily understand.