Dear Rock Star Autism Siblings – Five Pieces of Advice

D, A and H, about five years ago.

D, A and H, about five years ago.

This is Day Seven of the Ali Family #AutismTruths – April 7, 2017. This letter is written by 13-year-old “A,” D’s sister.

Dear Rock Star Siblings,

Hi! You might know me by the name of A – that’s what my mother likes to call me in her articles. I’m 13 years old, and I’m in eighth grade. I have two brothers, one who is nine and one who is nearly 17. My little brother is a hilarious goofball who never fails to make me laugh. He’s one of the biggest clowns I’ve ever met, and he has the most chill, laid-back attitude ever.

In our family, he’s the one who keeps everything amusing and humorous. My older brother is profoundly autistic, and he’s one of the strongest and most affectionate people I’ve ever met. He has a certain strength in him that I admire so much; no matter how many things go badly – and trust me, there’s a pretty extensive list of things that have gone badly in our family’s life – he gets right back up and moves on with his life.

He’s loving and caring in his own distinct way. He’s very different from a lot of other older brothers, but I love him just the way he is, and he’s the best older brother than anyone could’ve ever asked for.

I want to share some advice with you all. Now, I know that every autistic family is different, and different things work for different families. But this is just some general advice that usually helps everyone.

The things that I’m going to be telling you may be things that you already know or they may be things that are brand new to you. Either way, I hope that my advice aids you in one way or another.

Now, first things first, none of this is your fault. I can’t say this enough. There have been countless times that my older brother has had a bad meltdown, and I silently wondered, Is he mad at me? Is this my fault? But if there is one thing that I have learned over all the years that I have been my older brother’s younger sister, it is that absolutely nothing good will come out of you blaming yourself for what your sibling’s life is like.

If God made it this way, then God made it this way, and he has a reason as to why he made it this way. It might not make sense now; it might not ever make sense – it still doesn’t make any sense to me. But I promise you that this is not your fault.

In my religion, we believe that God does not place a burden upon you more than you can bear. So, no matter how bad things may get, you can do this. I have faith in you. I support you.

Second, don’t dwell on what could have been. When I was younger, I always wondered about what my life would be like if my older brother wasn’t autistic, if my family was “normal.” If you think about what could have been, you’ll only be dragging yourself down, and it will make it harder for you to accept your family’s autism life.

Instead, you could think of ways you can help your sibling; ways you can make it easier on your sibling and yourself. Love them just the way they are. I know that I can’t just say that and it will automatically happen, but try your best.

When I think about my brother, I no longer think of what he is like now and what he could’ve been like if he wasn’t autistic. I only think of who he is now, and I can’t think of him in any other way anymore.

Third, try to help your family in any way you can and make things pleasant. All the little things count. Ask your autistic sibling how their day went. Even if they don’t respond, it’s always nice to ask them. It will make them feel appreciated, trust me. Make sure that you spend some time with your siblings every day, even if it’s only just for ten minutes.

It’s so important that you have a good connection with your sibling and you let them know that you love them and care about them in whatever way you can. If your sibling seems to want space or alone time, give it to them. It’s also important that you help in your parents in any way you can. If they’re having a hard day, do something nice for them, even it’s something little.

I make my mom chai (tea) if it seems like she’s not having a good day. I give her lots of hugs, and I try to encourage her when she is having a difficult day. I ask my dad how his day went every day, and I also give him lots of hugs. Everything counts. If you have any other siblings, pay attention to them and play with them, too. Have a good connection with all your siblings.

Remember, your life isn’t totally circling around your autistic sibling. Live your life!

Fourth, I learn new things about my older brother every single day, and our family is constantly changing, constantly growing together as people. You’ll always be learning new ways to help your autistic sibling, new things that aggravate them or make them happy, new ways to ensure that they are at peace with themselves.

Be open to change, because in an autism family, all the plans can change in one second. It’s fast-paced, it’s messy, it’s difficult and it’s fun. There have been countless times that my family was planning to go to the park, the grocery store or on vacation, and then something changed, and our plans were changed, postponed or cancelled.

It can be super annoying, I know. It still annoys me sometimes. But you’ve got to roll with it, or this life will be awfully hard on you. It sounds harsh, but it’s the only way I can say it.

Fifth, and final, take some time for yourself. Alone time is valuable and it’s always good to have time to relax by yourself and just chill. Take a step away from everything from time to time; take a breather. Relax in whatever way is best for you.

For me, I like to play with my cat, read, play my guitar, make some art or just sleep. Maybe you like to relax in a different way. Also, live your life! Have a fun time at school, hang out with your friends, take up some hobbies. You have a different and unique life, but that in no way means that you can’t do anything else. Don’t let anything stop you from being you.

That’s all the advice I’ve got to give (for now). I hope that it helps you in one way or another. I can’t promise you that this autism journey will be easy, because I know that it won’t be. It’ll be hard. But it’ll also be incredibly rewarding. It’ll be hard, painful, beautiful, wonderful and a thousand other things.

With love,

A

About Dilshad Ali