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theasdconversation-blog · 7 years ago

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Conversations about Death

Death is everywhere. Death is something that affects everyone and everything (except perhaps the Turritopsis dohrnii, an ‘immortal’ breed of jellyfish, but that’s another story). It is therefore expected that at some point, someone with lower functioning ASD will know someone who will pass away. In terms of close relatives, the first major death in the family was my grandmother, my father’s mother. Although she lived abroad, we did travel once a year to see her and other of my dad’s family, so my sister knew her well. We would play in her living room, and one of my older cousins would entertain her for hours while my mum, dad, and grandmother sat around and watched amusedly. Her death was the first one that made an impact in my sisters’ life.

My grandmother, however, was not integral in the functionality of my sister’s routine. Once home, my grandmother’s existence would not affect how my sister lived, what she thought or what she did. Therefore, in the grand scheme of things, her presence was not missed, and had no truly negative impact on my sister. For this reason, she continued with a trend that had unfortunately become popular when more distant family members died – she laughed. It became funny. To this day, she will randomly come up to my dad or mum or even me and ask, “Where is Betty?” with this look of pure mischief on her face. And every time we explain to her that it’s not nice, that she’s being mean, she’s hurting our dads’ feelings, things along those lines. Sometimes she takes it and walks away – sometimes she is persistent and keeps playing, not realising it’s not something that we can play about. I’ve always been the hardest on her, because I refuse to coddle her when I know she can be pushed and grow. For that reason, I let her see that I get mad, and tell her its bad. This usually leads to her apologising, though anyone who knows this family knows it’s to save herself from trouble and lacks genuine empathy. But it’s okay, it stops, and prevents her from bringing up the deceased. For a while.

In 2014, while living in Scotland, my roommate took his own life. The summer before he had spent living in DC, with a host family that had taken him in while he was still in high school doing an exchange programme. While he mostly stayed with his old host family, he did come over quite a lot, stayed with my family, and slowly integrated into our lives. I even came home once from spending the night at a different friends, and he was having iced tea in the kitchen with my mum, just sitting there having a blether. He was part of the family, and now he was gone. It was the night of Thanksgiving, and shortly after, I went home for Christmas in the US, operating as an empty shell. In the span of 3 weeks, I had gone from studying for finals in my apartment to being moved about like a hot potato after being evacuated from my flat, losing my other best friend/roommate as she dropped out of University, losing everything I held dear at that time. I studied for finals, organised for his family (who lived in Denmark at the time) to come collect his things, and had to file loads of important documents in the UK, as he had left me his next of kin. Loads upon loads occurred in this time, and after I did successfully complete finals, the busyness that kept me numb was no longer available to keep the emotions at bay. I arrived back in the US more broken than any 21 year old should be. And now, I was coming back to a place that had previously been so integrated with his presence, I could still smell the cheap cologne he wore over the summer in pockets of my room. With everything that happened, this meant I had to have that conversation about death with my sister.

All siblings fight at least once – it’s healthy. Parents who have a combination of ASD and non-ASD children tend to prevent fighting between siblings with phrases such as “he/she doesn’t understand,” “it’s not their fault,” “yelling/fighting won’t do any good.” It may be the correct thing to say, but that doesn’t mean its the correct thing to be heard. It meant that I went into that conversation knowing I would be followed around for months, perhaps years, with my sister asking, “Where is Kristof?” with that mischievous look in her eyes that would make any sibling want to tackle the other. I sat quietly and explained to her, but when she asked where he was, the anger wasn’t there. Instead, tears came to my eyes, and I took one of those horrible chokey-breaths that are bogged down with unshed tears and said “he’s gone.” And then I looked up. We made eye-contact, something people with Autism don’t normally do. And then she didn’t ask again.

#autism #autismspectrumdisorder #asd #livingwithautism #insight

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