It’s not easy to be the sibling of an autistic person. As our autistic siblings face challenges and trying times, so do we. Though others may expect us to innately understand and love them without any moments of frustration, it’s not that simple. In fact, the struggle some siblings face can lead to hurt and alienation. If you are having trouble, I hope these five tips will help as you consider your relationship with your sibling.
Take the time to understand your sibling’s discomfort by tuning into what makes you uncomfortable. My sister and I have been together many times during experiences that were difficult for her. For example, sad songs (causing overwhelming emotions), full cups of soda (causing anxiety over spilling), and loud noises in general ended in having to leave theaters early with a little sister who couldn’t stop screaming. These outbursts used to frustrate me and, at times, I would wish things were different.
But I never took the time to understand how frustrating it was for her. As I got older, I began to realize that I have similar outbursts. Networking in a crowd of strangers, being in high places, and having to learn something new are all things that set me off and make me want to cry, scream, or run away. Just because your sibling may feel things with a greater intensity doesn’t mean that you haven’t been in similar situations.
It’s more than likely you share some similarities with your sibling — a favorite color scheme, tv show, songs on the radio, dinner dishes, school subjects, games, etc. As different as I have felt from my sister, I am aware of how much we have in common — especially our dislikes (i.e. itchy clothing, Dad’s “barf dip,” cleaning, etc.). I may not be as vocal about those things as she is, but nevertheless, we find ourselves sharing a lot of experiences due to those similarities. When you find common ground, you become closer.
While it is important to be together, it’s just as important to be apart. When my sister and I were younger, it felt like I was always going to her appointments and watching out for her at school. Luckily, I wasn’t too bothered by this, but it can be hard to communicate hurt feelings and it must be done if you’re developing any resentment or jealousy.
My parents helped by making sure I got special time with them, and that spoke volumes to me. Having time with your parents alone and time on your own provides you with needed attention and the understanding that your life doesn’t have to revolve around your sibling’s.
It’s enlightening to hear others’ stories and discover the community that you have always been a part of. It’s also a great way to get perspective and perhaps even shift the mental paradigm of acceptance. In a research project I did a few years ago, I conducted interviews with professionals in different fields who have autism and asked them questions about what would make their lives easier. The more answers I received, the more I saw how I’ve misunderstood my sister’s needs over the years. Though I know her well, it doesn’t mean I can anticipate everything or understand what’s going on in her head. The more you take the time to listen, the more understanding you will have and the less you will react. And sometimes, that’s enough.
Starting at a young age, siblings often have a lot of responsibility placed on their shoulders. Depending on where your sibling is on the spectrum, you may find yourself in a parental role. Growing up, I babysat my sister a lot even though we are only three years apart. A lot of adults in my life would tell me how “grown up” I was and how lucky my sister was to have me. At the time, hearing that was a big ego boost, but later on it started to weigh heavily on my shoulders.
Today, my sister lives her life and I live mine. We will share a home again someday, but for now, she lives with our parents and does quite a bit independently. In fact, she takes care of our grandmother with my mom.
The happiness and future of your sibling does not rely solely on you. You are not supposed to be an expert on all things autism related. And when people ask you questions or make you feel guilty for not doing enough, remember that you and your sibling’s wants and needs are yours to understand and handle.
If you are struggling with accepting your sibling, you are not alone. But if you love them, you will put in the time and effort to get to know them better. It just takes a listening ear, some self-reflection, and an open heart.
Hannah Jones Knight works as a designer in Indianapolis, but is also an advocate for autism awareness and neurodiversity in the workforce. Her passion comes from her younger sister who is on the spectrum. Her goal in 2020 is to get more involved in the autism community by continuing her research from her master’s studies and spending more one-on-one time with her sister.
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