I used to hate Abba.
You might think this has nothing to do with my sister, but it does.
When my sister and I were children — before the creation of iPods — if we were in the car for any length of time, we’d listen to the music on the radio or CDs. At some point, I can’t remember how, my sister claimed full control of the music in the car. And it HAD to be Abba. Specifically, Abba Gold: Greatest Hits. We listened to Abba in the car for so long, I couldn’t fully enjoy Abba for years.
Sometimes I still cringe when I hear the opening of Dancing Queen.
This is something I can look back on and laugh at. I could tell many other stories like this, quirky fun. Something to chuckle about.
My family was on vacation in Belgium and were staying in a suite that had a kitchenette, so we could just have breakfast there. The day before, we had bought a pint of strawberries from a local market in Germany on a day trip… they weren’t cheap.
Then I heard this conversation from the bathroom:
Mom: Where did the strawberries go? I just put them on the table.
Mom: [Sister], did you eat all the strawberries?
Apparently, my mom had placed the strawberries in a bowl on the table in our hotel suite and didn’t indicate that the strawberries were for everyone. Mistaking them for her serving, my sister — who LOVES strawberries — happily ate them all. She felt quite guilty when she found out they weren’t just for her.
This is a story we laugh about a lot. I like to tease her about it once in a while.
My first memory of my sister was visiting her in the hospital and seeing her in the incubator with breathing tubes in her nose after she’d caught a chill.
At 3 and a half years old, it’s not what you expect when seeing your baby sister for the first time.
My mom was too tired, recovering from a C-section, to comfort me too much. I don’t remember where my dad was, though I’m sure he was there somewhere.
She’s the only sibling I’ve had.
I’m the eldest and she’s the youngest, though for a couple of years I was the only. I don’t know now what 3-year-old me was thinking about having a sister, though I did enjoy being in the company of babies.
As I grew older and saw the differences in my sister from those I saw in my friends’ families or on TV, I started to think about what things would be like if I had another sibling.
I wouldn’t trade my sister for the world, but sometimes I still think it would’ve been nice to have another sibling in the trenches with me. Someone who completely understood.
I don’t remember when exactly I was told my sister has autism, but I know I was too young to really understand what that meant.
This was before autism diagnoses became more widespread — before ASD (autism spectrum disorder)— and I remember being told a lot of different things, especially, “high-functioning” and “she might grow out of it.” The word “autism” didn’t mean much to me for a very long time, because it seemed too ambiguous.
It was a somewhat difficult learning process for my parents and me, as we discovered — and continue to discover — what my sister was/is capable of and where she needed/needs extra support.
Of course, being a child of 7 or 8, how could I be expected to know what all of these different things meant? All I saw was that my sister was different from everyone else’s sisters.
That sesame street episode with the autistic character would’ve been SO helpful for me as a child.
I never really had a support system outside of my parents. They were under extraordinary pressure bringing up my sister and trying to support her, all the while hoping, praying, assuming that I would be fine. I was the “normal” kid.
None of my friends ever had a sibling with autism. Even now, only my family seems to have direct connections to others with special needs.
There was always this disconnect.
Growing up, my friends wouldn’t understand if I came to school with a story about my sister’s meltdown from the previous night. Most of the time I just acted like my sister was totally normal, only mentioning her autism when I had to. She went to a different school, with a program tailored to children with ASD, so on a day-to-day basis, I could pretend I was an only child.
But I needed someone to talk to that wasn’t either of my parents.
“You understand she has autism, right?”
That was the phrase I got if I wanted to vent or if I’d done something wrong in front of her or just got frustrated and snapped.
I needed someone to listen and not immediately jump on me for not being 100% understanding. And it’s not as if I didn’t understand. There was no way I couldn’t understand. But sometimes I needed to get things off my chest that maybe weren’t the most sensitive.
But I feel like that understandable considering I’d sometimes get called the worst sister in the world and sometimes I’d even get hit.
It’s hard to talk to someone who isn’t the sibling of someone with autism. My parents have a completely different perspective and it’s a completely different situation.
So I write. My strength is in telling stories. This is how I spend my time, and the best way I can contextualize what it’s like being the sibling of a person with autism.
I’ve been wanting to write this article for a long time, but could never find the right way to go about it. Any time I wanted to write something negative I felt so guilty.
And that’s kind of what being a sibling of autism is: it’s the guilt; it’s the resentment; the embarrassment; the challenge of trying to understand, especially when you’re young and all you see is that everyone else has a normal sister and you don’t.
Sometimes it’s meltdowns on your birthday or because she didn’t get any presents or falling down in the middle of a crowded sidewalk. Sometimes it’s episodes of anxiety for a reason no one can discern and she can’t articulate. Sometimes it’s crying when others are arguing because even our fights have to be about her.
Maybe that’s a little harsh.
Most of the time I feel ashamed. Not because of my sister, but because of me. I’m ashamed that I haven’t always been the best sister; that I haven’t taken a more proactive role in the special needs community; that sometimes I just want a break from being a sister.
My sister and I like going to the movies together. She especially enjoys animated movies, so if one comes out that looks like we’ll both enjoy, we’ll go together.
It’s a good activity for us because it allows us to bond, joke, and chat, and it’s not a stressful environment for my sister. We can fully enjoy ourselves.
We went to see the second Lego movie when it came out. We shared popcorn and had a good time as we usually do. Afterward, we laughed about having the Catchy Song stuck inside our heads.
Sometimes everything I say is wrong. Everything I say needs to be picked apart and questioned. Looking for some slight that can be used to start a fight. Or something.
I can’t begin to imagine what the reasoning is behind it. But it happens.
“Just stop talking,” I tell myself. Because nothing I say will be spared.
It hurts. I know she’s not trying to hurt me. But it does just the same. I feel as if my silence is more valuable than trying to have a conversation or a relationship with my sister.
No jokes. No negative remarks. Even if they aren’t directed at anything to do with her.
I love my sister, deeply. That’s what made me feel guilty about writing this piece because I never once wanted anyone to think I don’t love my sister.
But I don’t love the way the world can’t accommodate her. That so much of the responsibility is placed on the shoulders of people who need support themselves.
I know that when I’m older and my parents can’t take care of my sister anymore, it’s going to be my responsibility. I wasn’t brought into this world to be my sister’s keeper, but it’s become my destiny. For better or for worse, my future will always be determined by my sister.
And sometimes I just want to scream at the universe that it’s unfair. She doesn’t deserve to live in a world where she can’t do everything she wants. I deserve to not feel guilty about wanting to move across the country.
If you are also a sibling of someone with autism, I want you to know that you’re not alone. It can be lonely, especially when you’re the only sibling. But there is a community and it’s never too late to go looking for them.
Here are a few helpful resources: