Adults with ASD and Death: Mourning and Mornings Aren’t Easy

MBHM with mother, Beth, in 2003

My Brain Hates Me with her mother, Beth, in 2003

Growing up on the spectrum but being undiagnosed was difficult enough. I’ve experienced a lot of deaths along the way in the up-close, gut-wrenching way that some people do. Death is a part of life, but I’ve never known how to grieve. Whether this is an ASD characteristic, a failing on my parent’s part (which is doubtful because society is really uncomfortable with death as a natural process), or merely something that we as humans have lost the ability to do is unknown.

A friend of mine lost her mother in a way that is heartbreakingly similar to the way that I lost my own. The difference is that my mother claims to have been ready and her mother still had some fight in her. Sometimes fight isn’t enough to tip the scales and God, or science, or what or whomever, does what they are going to do. It’s tragic and I am incredibly sorry for her family.

Of course, those feelings about my mother in her final months are flooding in, and the feeling of fresh grief is flooding in, and it’s taking a long time for me to process all of it. I feel a bit frozen by it. Overwhelmed.

Autism in Adults is Still Talked About More By Adults with Autism than by Professionals

This morning, I took to the internet (as I do) to find some articles on adults with ASD and how they grieve. It came as no surprise that most of the information was written about how to handle children with ASD who are dealing with a death in the family and that the rest of the information were scattered personal accounts. Even Psychology Today has a personal account, albeit from one of the most respected autistic people in the nation, Lynne Soraya.

The trend that I see among personal accounts, and that I have felt during situations in which I have had to handle my own grief, is fear of doing it wrong. As an adult with autism, I understand that there are rules and social graces and expectations, but I don’t always know what they are or why they are, so I’m not always certain when it’s okay to break them. My husband is good at telling me when I don’t need to worry about other people and when I do. My mother’s funeral was a good example of when he told me I shouldn’t have to worry about other people.

Adults with Autism Feel Like They Are Doing It Wrong

His mother’s funeral was an example of when I did have to worry about other people and how I acted. My grandparents’ funerals were the same. I had to be on my best behaviour because those deaths weren’t about me. They were about other people losing friends and parents. But it’s very confusing.

I know how funerals are supposed to happen in my family. You have a wake, you have food, you dress up and Southern women tell inappropriate jokes while sipping sherry and eating little ham biscuits, then you have the funeral. Occasionally, I sing something. You don’t cry unless you are also telling a funny story about the deceased. There are always funny stories about the deceased. Always.

Growing up, I never saw adults cry at the funerals I attended. I saw people be quiet. I saw them look sad. Maybe I just didn’t look hard enough because I was so distracted by everything else that was going on. There were pretty dresses and suits. Lovely grass. I got to dress up.

I don’t remember if my mother cried at the funeral for my twin brothers.

So when my mother died and I cried at her grave side and I couldn’t stop crying… I felt like I was doing something wrong. When people came over to my house after for wine and little sandwiches, it had to be perfect because that’s what you do. You give people wine and little sandwiches. I was so worried about doing it right so that everyone thought that I was good at funerals and grieving properly.

That’s all that I thought grief was.

When everyone left the house, I thought that I would feel better. I thought that I wouldn’t feel sad anymore.

But I, and all of my grief, were still there the next morning when I woke up. I had no model for that. Because I grew up in a family that suppressed emotions and went on about their business, I didn’t see people being sad. I didn’t connect my mother’s drinking with sadness. I didn’t understand any of it at all.

Without those models, I had nothing TO model. I had thrown the perfect funeral… and then I didn’t know how to grieve for my own mother.

Society’s Tendency to Sugar Coat Death is a Detriment for Adults & Children with ASD

In December of 2013, about 4 months after my mother’s death, I wrote something about not understanding what was happening to me. I didn’t understand why I would suddenly cry over nothing or just stand in my kitchen for half an hour. I turned to “Buffy the Vampire Slayer” for that. I wrote a blog called, “Buffy Terms” because that’s how I started to explain grief to myself.

Weirdly enough, on this, the day after my friend’s mother’s death, I am having a “Buffy” marathon at my house with two other friends. We plan to watch “The Body,” which is the episode in which Buffy’s mother dies. Buffy’s mom dies. My mom died. My friend’s mom died. People just die.

Whether you have ASD or not. I don’t think any of us really know how to handle that well. But I think that there needs to be more literature out there for people who are adults on the spectrum, because we don’t know what to do and we feel like we’re getting grief wrong.

There is no way to get grief wrong.

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Buffy Terms

When I was a little girl I believed I was both a My Little Pony and, at times, a mermaid because “Splash” was my favourite movie. Those were the two universes I desperately needed to exist and wanted to exist within. Ponyland was real, and when I was in water, mermaids were real.

Television provided something that the world around me could not: a structured place where there are specific rules, consistent core characters and stereotypes that I could grasp. In 1992, “The X-Files” premiered and I had a new universe over which to obsess, characters to love and with whom I could feel what felt like genuine connection. Scully’s smarts mixed with her human fragility, and Mulder’s wit and sadness… and the whole world against them- of course an un-diagnosed Aspie would feel at home. 

Then came “Buffy.” Buffy the Vampire Slayer, the series not the movie, premiered in 1997. I was a big fan of the movie, and couldn’t accept a non-symmetrical Buffy after Kristy Swanson’s pretty little face. I watched the series premiere, and couldn’t really get into it. It was 2000 before I watched another episode, and then Sarah Michelle Gellar didn’t seem so bad.

Eventually I got caught up on the series and did the thing that I do with female characters to whom I am attached. I obsessed about Buffy’s hair and clothes and personal drama. What she felt, I felt. I understood the deep darkness within her that her responsibilities as Slayer bred within her.

It’s been a few years since I watched the series in its entirety, but lately I’ve been playing it marathon-style. I didn’t really figure out why until the other day, and that’s why I’m writing this right now.

My mother died. I don’t know how to cope with it. The Buffy universe is something that I find comfort in… and Buffy’s mother dies. Joyce doesn’t die a fast, unexpected death either… but spends time in the hospital. Buffy has to cope with the possibility that her mother might die… with all of the other things wrong and evil in the world… Buffy’s about to lose her mother. Buffy feels guilty about being caught up with her life and her duties and her stuff. And then Buffy’s mother is just gone. No big bad comes and gets Joyce. No evil. Buffy’s mom just dies and Buffy has to deal.

I haven’t been able to make that whole process work for me- the dealing bit. So I’m trying to deal through Buffy. I’m trying to grieve for my mother through Buffy.

I don’t know how I feel 80% of the time. Frequently I will cry or be upset and not really know why, or I won’t be able to articulate it to others. But I can explain it in Buffy terms- at least to myself.