I was 10 years old when I first heard the word “autism.” I was told they thought my little brother was different and he needed special tests to figure out how to best help him. My mom explained they thought he had something called “autism” and more specifically, “Asperger’s.” I laughed at the funny name at the time and didn’t really understand what it all meant. I remember riding in the car after dropping my brother off for his testing and saying that I bet Asperger’s was what he had because the name was the most ridiculous-sounding. Oh, the things we think are funny as kids. I didn’t understand autism, I just knew that my brother had trouble in class, with friendships and social situations, loud noises, clothing and food, among other things.
When my brother received his official diagnosis of Asperger’s syndrome (now autism spectrum disorder) my mom bought me children’s books written from the point of view of the sibling of a child with autism. I can remember asking her to read and re-read the books to me over and over again. I wanted nothing more than to understand my little brother. I wanted to help in any way I could. As kids at school would come to me and tell me all about how my brother was “weird” for displaying what I now know to be typical autism behaviors (obsessions, meltdowns, sensory struggles especially with loud noises etc.), I would tell them proudly, “My brother has autism. He isn’t weird.” Now as an adult, I’ve learned and understand so much more about autism and how it impacts my brother. Still, it hurts my heart to see him struggle.
My little brother,
You are my brother, first and foremost. You are not your autism. It is simply one piece of your identity. You are also an awesome gamer (I am totally jealous of your dedication to and ability to game), smart, a math whiz, a YouTube fan, a massive “Supernatural” (the TV show) fan, funny, caring, loving, a good friend, honest and sweet.
Even though I doubt you’ll ever admit it, I know you worry so much about me and my health. I can see it on your face whenever I leave to be hospitalized, have surgery or just see a doctor. I cannot imagine how hard it must be for you to have a sick sister, one who cannot always play with you or spend time with you when you need it. I cannot imagine how hard it must be for you to wonder if I am going to be OK every time I am in the hospital or have surgery. For you not to be able to know how I am doing because we are in cities hours apart. For you to have to be away from Mom for extended periods of time because she needs to attend to my health. For you to have to take CPR and AED (automated external defibrillator) training knowing full well that you may need to use it someday to save my life if I were ever to go into cardiac arrest. For you to wonder if I will wake up the next morning to see you before you go off to school.
We’ve been through some extremely difficult times together, especially since Mom had her cardiac arrests in 2012. Despite this, we’ve both come out the other side, still standing.
You are not alone, no matter how lonely life may feel at times. I will always be here for you, so long as I am breathing. We are in this together. I am in your corner, cheering you on and fighting alongside you and for you. With that being said, please resist comparing yourself to me. We each have our own unique challenges and struggles in our everyday lives. Yours is your autism. Mine is my heart condition (long QT syndrome), sun allergy (solar urticaria), joint problems and other health issues. We both have disabilities but vastly different strengths and needs. Just because I can do something you struggle with doesn’t make you a failure — just like you being able to do something I struggle with or cannot do does not make me a failure.
You are not a failure. I see you doubting yourself. I see you struggling with self-confidence and self-esteem. I see you wondering what the future holds for you, or if you even have a future at all. I see you coming home from school so incredibly frustrated that you are telling people what you need and no one is hearing you. I see you. I hear you. I am here for you. I want nothing more than to help you in any way I can so you can have the life and the independence you want. I wish I could protect you from the world, but I know I cannot.
I love your honesty, even though sometimes you can be a bit too honest. I love your unique perspective on life, that everything is black and white. You always have such an interesting viewpoint and bring up perspectives I had never even thought to consider when we talk about important issues. You have helped me understand the world in a way no one else could. As a young kid, you taught me empathy at a capacity few other kids understood. I love you so much more than words can ever describe. I am so proud of you for being you. That is enough. Remember, we are in this together.