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What No One Tells You About Having a Sibling With Autism

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Growing up as the oldest sibling, you take on this protective, parental role of your younger siblings. However, when your youngest sibling has autism, you may start to notice you grow up quicker than your peers. You go with your brother to his OT and SLT sessions, you learn to read his emotions when he can’t communicate them to you, and you learn to communicate through PECS and sign language so you can build a relationship with him. I always wanted to be that person for Dian that took down any barrier in his way, whether that be communication or societal barriers. You don’t have time for childish games, or silly celebrity drama when you are growing up in a world you want so desperately to be more understanding of your sibling.

Becoming a teenager means relationships, discos, and finding out who you are as a person. But it is also about learning how to tell your friends that your brother has autism, that you have to be home by 9 so his routine doesn’t get messed up, and that you have to cancel your friends coming over because this week has been a tough one for your brother and he needs his space. It is learning a new way of communicating with your friends that they might not be aware of and trying to avoid them judging by expressing it right. For me, I just wanted my family’s way of doing things to be accepted, and in order for this to happen, I had to learn a new way of communicating. Wanting the best for your sibling with autism can mean others see you as making sacrifices in your own life, but you know that putting your sibling through distressful situations isn’t worth it.

As you plan your life, goals, and milestones, your autistic sibling’s future is constantly playing on your mind. What will they want to do when they finish school? What will their life look like when they are 40? Will they get to achieve all they want in life? Heading into my third year of college has really made me find balance and patience for what both of our futures will hold. I want to be close to Dian when I graduate so I can become his carer when the time comes. Sometimes I forget how far away that is yet. I have time to travel, see cities and countries that have been on my budget list for years. You will as a sibling learn to find your own balance and place that makes you feel like you’re doing enough and not being selfish for having your own dreams and plans in life.

I believe the most important lessons you will learn are that life is extremely spontaneous no matter how many routines or schedules are in place, that life is so joyful no matter how many meltdowns will happen, and that life is very kind no matter how many ignorant people you meet. Learn to fight the negative with the positive and take every small win as a huge victory. Your sibling with autism is one of the best people in your life and they will go on every journey life has to offer with you. No one can prepare you for the life you will have as a sibling of someone on the autism spectrum, but I hope this gives you an insight into just that.

Originally published: December 14, 2021
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