What’s It Like Growing Up with a Sibling with Autism?

You really wouldn’t believe how often I get asked that question. Sometimes it feels like it comes up constantly. Usually the question comes from parents with a slightly worried look in their eyes and a furrowed brow. I can tell they’re worried about their other children, and can see that they love them, but also want them to grow up normally and can see that is not possible. I don’t even know if the parents themselves know what exactly they’re worried about. For me, believe it or not, it’s a harder question than you would think to answer. 

See, I don’t really know what a world without autism is like. I was born towards the end of the 1980s, 1986 to be precise. In other words, just before the first wave of autism really hit. Oh, I know autism existed before I learned about it, but it was the rare, one in ten thousand statistic we hear about now. Even growing up, I remember there was maybe that one kid in school who had a touch of ADHD or Tourrette’s, but that was about it. That was all before Josh.

Josh, as you might guess, is my brother who has autism. He is my youngest brother. I have two more. I’m the oldest of four boys; I’m nine years older than Josh. He was diagnosed when I was eleven, but as I’m sure you know, he was having problems long before his diagnosis. The diagnosis just means you know, or sort of know, what’s wrong. Or at least, that’s what it means to parents.

I think that’s where things are different to start. So, as parents, you get the diagnosis from a doctor, or a therapist, or whoever, and then you start to have to deal with it, right? You go through a grieving process, and then a researching process, and probably a few more processes. As a sibling, it’s different. Honestly, I don’t even remember when I found out Josh had autism. I don’t even really remember thinking it was that big of a deal.

I know, I think I heard your gasp of shock through the computer screen. How could I not think it was that big of a deal? Didn’t I know what it meant? No. No, I didn’t know. I think that’s the first thing you should really know about growing up as a sibling. We don’t know what it means, or that it’s a big deal at all. It’s just a word. More specifically, a word that this eleven-year-old didn’t understand. And this was back before we really even had the internet, so I wouldn’t have known to Google it either, even if I had wanted to, because that’s not how kids work.

I like to tell my families that the siblings are in some ways more flexible than the parents. Now, this is just my experience, and I’m sure some kids have a harder time than others. For me, it boiled down to this: my little brother was broken. Now, I know that’s not politically correct and some higher-functioning adults with autism may take offense at that, but hey, I was eleven. I didn’t know what politically correct even meant.

Here’s the thing though: it was true for Josh. He was in intense gastrointestinal distress, crippled by obsessive compulsive behaviors, and just generally miserable. He had more food allergies than we had ever even known were possible, and the tiniest infraction would make all of our lives miserable for about a week. We couldn’t take him anywhere, including out to eat. I remember once, before we had really even started biomed, Mom had taken all four of us boys to the library. Josh was obviously really little then, and as you can probably imagine, he cried a lot. Really, more like constantly. So we’re trying to pick out our books or movies, and Josh is crying, and a nasty librarian walks up and tells mom that if she can’t get Josh to be quiet, we’d have to leave. Mom waited until she walked away, then bent down and said to me, “My tax dollars keep this place open, we’re not leaving until we’re finished.” And we didn’t leave until we were finished. 

I think that’s the first important lesson about autism I learned. Josh and his autism were largely out of my control, but that didn’t mean it had to determine every aspect of my life. I couldn’t help it if he threw a tantrum or was having a bad day, but I could choose how I reacted. Mom and Dad helped me understand that by making sure that we other boys knew that we still mattered. So, when our house went gluten-free, dad would still take the rest of us out for pizza. Simple gestures like that told me that while autism was a reality in my life, it was far from the only determining factor.
 
I think that’s actually one of the best things Mom and Dad did for me growing up. I was still free to be who I was. I wasn’t just Josh’s older brother, or a free babysitter. I still had friends, went on Church mission trips and summer camps, and had birthday parties. I would definitely encourage parents out there to this for their other children. Don’t let the child with autism determine every detail of your other kids’ lives. Yes, undoubtedly, it is a determining factor in your life, and that’s hard, no doubt about it! Parents are my heroes because they never get the day off. But for your kids, let them have their own lives! And here’s the cool part, when you do that, they become just as passionate about autism as you!
   
So now, I’m twenty-six years old. Now some people would think I would want to get as far away from autism as I could. But instead, I work for my dad, helping him take care of families who have children with autism. How on earth did that happen? Well, because of how they raised me, I actually developed a strong relationship with my parents. I knew they cared about me and loved me, so when dad needed someone to come and manage the practice, I was happy to help.

So now as an adult, I’ve become a fellow fanatic. I really care about families struggling with autism, because I know exactly what it’s like. I definitely learned about what it is to grow up with a special needs child, and saw how it affects every day of your life, but I also saw my parents do it well. No doubt about it, my life growing up was very different from my friends. Not to say their lives were easy exactly, but they didn’t have a brother like mine either. That’s okay though! Looking back, I can see how much I learned about unconditional love and compassion from my parents as they struggled with having a son with autism.

To other siblings, especially ones whose little brother or sister was just diagnosed, I would say hang in there. Your parents don’t know everything, and they’re making it up as they go, and they’re doing the best they can. Be patient, this is a journey they never planned on making, and there is a lot of responsibility riding on their shoulders that you don’t see or even have to think about. And remember, there’s hope for the journey too. Josh is doing great now! He’s a tough case, and he’s not cured by any means, but he’s a real pleasure to be with now. His OCD and stomach issues are gone! My wife and I took him to see “Man of Steel” last weekend and the three of us had a great time. Here’s the thing though: you can’t ever get here if you don’t hang in there with your parents and your sibling. I know how tough it is — I lived it — but I know you can do it.

 

David Kartzinel has his Bachelor’s degree in Biblical studies with a minor in theatre and philosophy. He has worked for his father, Dr. Jerry Kartzinel, for the last three years helping families with children who have autism. His youngest brother, Joshua, was diagnosed with autism when David was twelve years old. He has been married to his wife Abby for five years.

 

 

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