Dear Lucas: You Have Autism

Dear Lucas,

You have autism.

Those words will follow you for the rest of your life. They will affect many of the choices you make and the ones we make for you. They might change the way people see you. People will treat you differently; talk to you differently. People will be thoughtless, careless and ignorant. Even people who love you will get it wrong sometimes. People will also be kind and helpful. The world is filled with all kinds of people. Some will tell you that you can, others will tell you that you can’t. Never let a few small minded people stop you from doing something big. Big plans cannot be detoured by small minds and your beautiful brain has some very big plans.

I remember crying the night after we received your diagnosis. It was an all-out weepy, tears streaming kind of a cry. It was not because I was devastated or that I wished you were “normal.” Both of my children should be anything but normal, anything but ordinary. I cried because of this world we live in. I cried because of the obstacles you will have to face: the ignorance, the cruelty, and the pain you will feel because of other people who just do not “get” you.

I thought of that time in preschool when that mean little girl told you that nobody liked you. I will never forget how the smile faded from your face. I saw the spirit drain right out of you. She might as well have sucker-punched you right in the stomach. That treacherous little shit took something from you that day. She took a little bit of your confidence. She took a little bit of your curiosity. After that, you didn’t gravitate towards the group anymore. You made your own space. I don’t blame you.

I cried for a while because there will be more of those little girls out there who will cut you down. They will make you feel small or defective. I cried because there will be well meaning but misguided people who will never understand you or autism and they will always try to see you their way and never beyond that. I cried and cried but then I stopped crying because I know, my son, that you are resilient.

You are stronger than a few harsh words or ignorant comments. I stopped crying because I am too proud of you to cry. I am proud of your strengths and proud of your weaknesses. Every piece of you makes me proud. No more tears would flow. Not on account of this world that isn’t ready and those people who will never get the joy of truly knowing you.

Lucas, you have autism. Those words have altered the trajectory of your life forever, but I want you to know that you are so much more than those words. You have so much more than autism. You have talent and razor sharp focus. You have remarkable intellectual capabilities. You have the ability to feel empathy so deeply. You can read emotions and feel tension in the room.

You are so “tuned in” that you have to physically distract yourself or retreat inside in order to deal with the abundance of sensory input constantly rushing over you. There is an intensity and determination you have when there is something you want that is unrivaled. You surprise me. You teach me. You inspire me.

Lucas, you have love. You give it. You receive it. You show it and you understand it. You have a family that will do everything we can to make the road a little less rocky. I will do whatever is in my power to protect you from cruelty and pain because when your heart breaks, my heart breaks more.

When I look at you, I will always see your sweetness and fragility. You are the little boy asleep in his bed, surrounded by dreamcatchers; one for bad dreams, one for good dreams, one for everything in between. It was your idea, an attempt at a solution to help your mind rest at night because that is when the circus of thoughts and questions parades through it. Your mind is this intricate kaleidoscope that never stops. I imagine you turning the thoughts, as the colors dance and shapes change. I love to hear about the way memories “taste” and how colors “feel.” Everything is interwoven and entwined with a complexity I can barely comprehend, but I will always try. I promise. Always.

Lucas, you can be difficult. You need so much sometimes that it drains my reserves and it leaves me feeling exhausted, mentally and physically. I try so hard to keep it together for you and your sister but sometimes I crack and I let you guys scream at each other, eat ramen for dinner or watch too much TV. I love you both so much it hurts, but you whine about everything. Like, a lot.

Some days you won’t eat. Food is too hot or too cold. Pieces are cut too big. We worry if you’re eating okay at school because you don’t tell us. We worry if you’re being picked on at school because you don’t tell us. We worry if you don’t have a friend because you don’t tell us. You cry if the shower isn’t literally as hot as it can get. It takes forever to put you to bed because your routine is getting longer and more intolerable.

My patience is thinner these days. I don’t want to raise my voice. I hate when I yell at you. Sometimes you need so much attention, I feel like your sister doesn’t get enough of me. I feel so much guilt. I want to better for both of you. You have a thing with your socks. It’s the same thing I did when I was little. I notice sometimes, your things are the same as my things. It makes me wonder if you take after me.

You sit in the middle of the sidewalk on the way into school to scratch your foot for five minutes. You insist on being kissed goodbye specific number of times while being patted on the back in a certain spot, at a consistent speed and pressure. Noises bother you. Smells bother you. People breathing close to you, bother you. You are demanding and unreasonable. You stretch us to our limits, but we love you and that love has no limits.

Lucas, you are strong. You cannot forget that because life will be hard sometimes. You are much stronger than most — strong enough to swim against the current and keep your head above water. All the while you were meant to have wings, not fins, and soar through the sky.

Lucas, you are different. You see the world in a different way. Autism is the name for the viewfinder through which you see. Because of this, autism is not, nor will it ever be a bad word. It is not something to be ashamed of. We will not stick that word in a corner or brush it under the rug.

Autism is a different way, and different is necessary. People who are different break molds and change the world. Einstein was different. Mozart was different. The world needs different. Be anything but normal because you were born to stand out.

Someday autism will be accepted beyond what we can comprehend right now. More children and adults are diagnosed everyday. There only continues to be a stigma around the word because we allow there to be. I need you to know, autism is not a genetic flaw that needs to be concealed. Autism is not a disease that must be cured.

Lucas, you are not broken. You do not need to be fixed.

Lucas, you are so much more than us. You see more. You hear more. You feel more. You experience more in everyday life than we can only begin to imagine. You see beauty in places we would never think to look. You find joy in things we would never think to consider. If only we could see things through your eyes, we would all be better off.

Dear Lucas, my beautiful boy, please remember that you do not need to change to fit this world. The world needs to start changing to fit you.

And above all, remember this: I am forever in your corner.

Love Always,

Mommy