Editor’s note: I wrote this post based on some conversations with my son Jack.
This is Jack.
My mother said we are going to your house for a holiday party this year.
Last time I came to your house it didn’t go so good. It was Saturday, December 14th, 2013.
I was very scared of your dog and when he barked I screamed and I accidentally broke one of your ornaments. Then someone ate the last cookie so I got my madness. We left early that day.
I was nine. I had autism.
I am feeling badly about that party. I remember all the wrong things about it. I thought I could tell you some things about me so this year is better.
I am fourteen now. I still have autism.
My autism means I like my schedule very, very much. I like to wrap myself in routine like a soft, cozy blanket.
It means loud noises make me nervous. Do not be surprised if I put my hands over my ears when I walk in the door. I just need to filter out all the different sounds until my ears get used to them.
The doctor says I am very tactile. This means I like to use my fingers to see things, even though my eyes work. It is okay for you to ask me not to touch things that are important or fragile. It is also okay for you to put them away if it feels easier for you.
You see, all of my five senses are turned up extra high and bright. Things sound very loud and taste very strong and smell very smelly. This is not an easy way to live.
Please, don’t be upset if you give me a present but I don’t look very excited.
I love getting a present. I really do.
But after I open it, I have to take my time and look at it carefully and decide how it will fit inside my life. I might be so busy thinking about this in my brain that I forget to say thank you.
Try not to say words that sound like maple syrup drizzled over a bee hive. You know, the kind that taste sweet in your mouth but are meant to give little stings.
Don’t suggest the gluten-free diet when you see me eating a roll with a lot of butter.
Don’t say maybe my autism would get better if I would just learn to stop pacing around the floor so much.
Don’t talk about how the latest research states kids like me who take medicine every night will maybe one day get a third eye or the disease of cancer.
Please, don’t insist I pet your dog.
Don’t insist I try your yams.
Don’t insist I sit the whole time for the dinner table.
In fact, don’t insist anything.
My mother and my father will do the insisting if they want. They know how to stretch me like a rubber band—just far enough so I don’t break. They know when is the right time to make me try a new food. They know when to make me sit and when to let me pace the floor.
They know what to do when I get my madness.
I have to take very big breaths and talk to myself and sometimes, I like to touch my dad’s hair.
It can be a help for me if there is a quiet place where I can go and do my breathing. It doesn’t have to be anywhere special—an extra bedroom or your sewing room is good. My dad will probably come with me because he knows how to make me calm.
When it comes to our family, try not to look at your clock too much. Sometimes we are late for parties.
This can be for many reasons. Maybe I took a long time to get dressed because I have to wear my button pants on special holidays and button pants take me a long time. Maybe I had to keep going back and making sure my pillows were straight on bed.
If we are late, don’t sing out about our lateness in a weird voice like this: you’re laa-aate! It makes all of us feel bad.
And sometimes, we have to leave early.
When we have to leave early it’s because my mother says I have had enough. I think she means I have had enough of the smelly food and the loud talking. The breaks in the sewing room aren’t working anymore.
If this happens, please don’t ask why and say we haven’t even had pie yet and can’t we stay a little while longer.
You see, autism families do not measure time in seconds or minutes or hours like everybody else.
We measure it in sensory overload, lack of schedule, and broken ornaments.
We measure it in madness.
Another thing is I don’t like hugging. This is because when people touch me I feel like I am drowning and maybe my skin will come off my body.
This doesn’t mean I don’t care about you. I do. My caring just looks different.
Ask me things.
Ask me about cookies and my school and my music.
I love music.
Listen for my words, for I take longer than most to say them.
Ask me. Ask me anything,
I will tell you that my favorite song is by Ariana Grande, and that I tried a new recipe for chocolate chip cookies the other day that said to use Crisco instead of butter.
I will tell you how we went to my brother Charlie’s basketball game last week and he made a big basket with the ball and everyone clapped and called his name. He was the center of the attention for the whole gym.
And in the car on the ride home, I said very quiet-like to my mother that I am never the center of attention.
I don’t like basketball.
I don’t even like clapping so much.
But for once, I would like to feel special. I would like to hear people call my name for something good.
And I will tell you.
Keep your eyes on my face while I search for a way to explain it.
Keep your hands still while you listen to my quiet, halted speech.
Keep my words close to your heart, for they are the rarest of gifts.
Keep me the center of your attention, if only for a moment.
Because inside of our beating hearts, I think we all want for the same things. We want to eat food that tastes good on our tongues, and to feel safe and warm and calm like we are wrapped in a soft blanket.
We want holiday parties with a lot of cookies.
We want less madness, and more quiet smiles.
Meet me where I stand.
Hear me when I speak.
See me as I am.
In case I forget to say it.