Mom Shares What Life Is Like for an Autism Sibling
My girl is 15. She is curious. She has always loved to learn. Always asked questions. She is interested in life. She is a reader. She is a gymnast and a musician. She has a red belt in karate. She’s never been afraid to try things. Or maybe she has, but it doesn’t stop her.
She loves superheroes, the flute, marching band, animals, Youtube videos of putting on monster makeup (okay, all Youtube videos), and baking and eating anything chocolate. She is like most teenagers. She wants to hang with her friends; she wants lazy alone time with her electronics and only a certain amount of time with her family. She also only wants attention when she wants attention.
Enter my boy, her 17-year-old brother. He is loving and sweet. He is athletic—rarely misses a shot in basketball. He also has a red belt in karate. He is amazing with jigsaw puzzles. He loves books and his iPad. He also has autism.
We have met a lot of children on our journey over the years who have autism. Most of them are not as affected as he is. One of the questions my girl has asked over the years is “ Why can’t he have autism like him or her?” referring to some of these children we’ve met. What she means is why does my brother have to be the loudest person everywhere we go?
Why does my brother have to have so many meltdowns? Why can’t he be more appropriate? Less rigid? Why can’t he have a conversation with me? Play an age-appropriate games? Why does he have to bite himself (and occasionally me)? Couldn’t he have mild autism where you can’t tell ALL the time?
I have no good answer for why. I have a lot of why questions myself. That’s the way God made him. He gave him to us to care for. We need to love and care for him the best we can. The way we treat him is an example to the rest of the world of how he should be treated.
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It’s hard for my girl. All her life when we go out as a family our outing is dictated by what my boy can handle. We go places during non-peak hours (early bird specials are our friend), we skip movie premieres and go when the movie’s been out for a while and it’s less crowded. We do a half day at Disney and leave when he can’t handle anymore. No typical child is ready to leave Disney after half a day. I understand how it can seem like she is number two sometimes. We do things separately from him as well, but I feel family time is also important.
When we go out in public, I wear a pin that says I Love Someone With Autism. I wear it so that if (when) he melts down, does something quirky, or screams “Help” at the top of his lungs people will see the pin and be able to connect the dots quickly, and know there is a reason for what looks like unreasonable behavior. Needless to say, this kind of behavior calls a lot of attention to us.
Not the type of attention you want. Definitely not the type of attention my teen girl wants. We are as calm as we can be. We tell him everything is okay. We tell him to breathe. We speak in soft tones. And we book it out of there ASAP. Should you encounter a situation like this you may wonder, well what should I do? It’s natural to turn toward a commotion, but please avoid staring.
An offer of help is nice even if we don’t feel there is anything you can do. Making a joke or neutral remark helps lighten things up. I can tell you that a nod and smile go a long way. My girl, especially, could really use a little support at a time like that.
Diana Romeo is a full-time stay at home of two kids, a 15-year-old neurotypical girl and a very sweet 17-year-old boy who has autism. She has a degree in business management, has worked in human resources. She enjoys reading, writing, cooking, walking, and yoga. She has been published in Autism Parenting Magazine and Exceptional Parent Magazine.
This article was featured in Issue 85 – Top Strategies for Supporting your Family