When I look at photos from my childhood, I can’t help but think about all the fun my little brother and I had together. A mere 18 months apart, I would drag him along on all my daily adventures of make believe. There’s even one home movie of my brother and I playing wedding — with him dressed up in a tutu.
Maybe he loved it, maybe he didn’t. Either way, he couldn’t exactly tell me no. Because he didn’t start speaking until a couple of months before his third birthday.
As a three-year-old big sister, I had a very important job as the official translator for my younger brother. It was up to me to decipher what he meant by every hand gesture and grunt, and pass along his message to the adults around us. While I’m sure my parents were a bit concerned about his lack of verbal skills, I think they mostly just chalked it up to the fact that he was a second child with a very verbal older sibling who rarely let him get a word in edgewise.
But then there were other things.
We all sort of knew that my brother was “a little different,” but we didn’t know why. We knew he didn’t seem to understand emotions or social cues and that he had funny “quirks” — things he would become fixated on. But, a lot of kids have specific interests … right?
I remember once in 7th grade my brother had a school assignment to create a timeline of his life. He had to document his birth, to a prediction of his death, and everything in between. He completed the assignment with laser-sharp focus and a great attention to detail and afterward it seemed to spark a fixation with time. He would ask multiple times a day, “Why does time go by?” He began collecting watches (at one point he owned 23) and synchronizing every clock in the house so they were exactly aligned. He was also interested in “dissecting time” and once leaving a watch of mine in a hundred pieces. It was a bit odd, but we all have our quirks.
At some point during junior high though, he was tested for an autism spectrum disorder and it was found that he had Asperger’s syndrome. The diagnosis was a lightbulb moment for our family. People didn’t know a lot about autism back then, but we would come to learn what this meant and it explained a great many things we never really understood about my brother previously.
In some ways it made life easier, but in a lot of ways it was just as hard as ever. There were a lot of “what ifs” that swirled around. “What if he had been diagnosed sooner? Could he have received different therapies that might have helped more at an earlier age?”
In actuality, there wasn’t much my parents could’ve done differently. Parents, teachers, doctors weren’t looking for it like they are today. But we are now, and it’s something that I am acutely aware of as a parent myself.
We all tend to view life through the lens of our own personal experiences and my lens of growing up with a brother who has Asperger’s has made me hyper aware of any and all potential symptoms. For the past couple of months, my 12-month-old has been really into flapping his arms. He’s doing completely fine in every other way, but it’s hard not to focus on the “Oh no! Repetitive movements like arm flapping can be a sign of autism!” thoughts.
I remember when I found out I was pregnant with a baby boy, one of the first thoughts to pop into my head was the increased likelihood of autism in boys versus girls (our first child was a girl). These are the things that my lens makes me see and I can’t help but worry about the “what ifs” myself — especially as we consider having another child.
What if this one is the one to have autism?
I remember seeing my mom struggle with the sharp learning curve of learning how to parent a child on the spectrum. The excruciating work of simply keeping my brother on task as he got ready for school each morning. I can recall one specific morning where he couldn’t find any clean socks to wear and could not get dressed for the day as a result since in his world, socks HAD to be put on first before any other items of clothing. He missed school altogether that day.
I recall many nights where my mom would just cry, overwhelmed by the sheer weight of her task and thoughts and worries of the future. Would he be able to function about in the world one day? Would he have a job, or fall in love, or have children? And sometimes she just cried because it hurt her to see him suffering — struggling to find friendships and understand social cues.
As a mom, it hurts to even imagine my own children having to navigate life with autism. I know it can be hard on children, parents, siblings, marriages — its ripples affect everyone it touches.
But it is not a “death sentence.” I don’t worry about my children being diagnosed because I think it means they cannot lead a full life. I have seen firsthand just what a person on that spectrum can accomplish through my brother. I am truly proud of all that he has done in his life in spite of his Asperger’s. He has a job and a home, he can drive a car. He’s married. It’s actually pretty amazing, when I look back on those early challenging years to see how far he has come.
But, I have also seen the challenges. The reality is that life with autism is more difficult than life without and while there’s nothing I can do to prevent it, I can continue to watch for signs and be aware. So that is what I will do.More On