Tell me everything you know about autism, and in exchange I’ll tell you all I know about a boy.
Tell me how people with autism can’t experience empathy.
Tell me how they hate wearing clothes with tags.
Tell me about the sensory processing, and the anxiety, and the meltdowns.
And I will tell you about my son.
His name is Jack.
We call him Jack-a-boo.
He is fifteen.
He has autism.
I know, I know. Autism is all so black-and-white—cut and dried, if you will.
It is the big throat-clearing, scientist-at-the podium speech.
Autism is the collection of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication.
Yes, he is delayed. Yes, he is emotionally young. Yes, he reminded me yesterday that we were out of milk approximately 3,628 times.
Still, he is not a stereotype. He is more than his label. He is bigger than this.
He is bigger than you or I or the slippery spectrum bell curve.
He is possibility.
He is change.
He is here.
I wanted an ordinary life. I wanted ordinary children and a regular family and I got none of that.
For whatever reason, I got this boy.
Genetics? A twist of fate? Payback for the one time I shoplifted a lip gloss to fit in with the other girls in high school?
Thanks to heaven above, I got this boy.
I don’t always thank heaven. Sometimes I get frustrated and sad and a little angry.
Sometimes I yell.
This seems to happen mostly in the late afternoon, when I have tried and tried to find something for him to do and all he really wants to do is organized the DVD’s into long, straight rows.
I yell because I can’t find my way.
But after he has called for me approximately one million times and finally settled into his bed with the right number of pillows, I sit in my office with my dog. In the silence, I consider the full picture.
See, life with Jack is like a tapestry.
On the front, the stitching is even, and straight. The yarn is arranged in a palette of color that is pleasing to the eye. The background is all white, and in the middle there are three words sewn neatly in block letters.
AUTISM SPECTRUM DISORDER
But when you flip the tapestry over and see the back, well, it’s a mess. The threads stretch from one end to the other without order. The reds and yellows are chaotic. There is no symmetry.
He loves his father. He is the only person he will hug with both arms.
Tell me about interrupted sleep cycles and unusual circadian rhythms, and I will tell you about my hallway-walker, my medicine-taker, my daybreak-riser.
I will tell you how every single morning, I straighten his twisted sheets and smooth his blanket over the mattress. I do this because although my boy is capable of loving, I am not always positive how to show him he is loved.
Tell me about anxiety, and I will show you a child who is fearless.
Tell me you understand what high-functioning autism is, and I’ll tell you about a boy who bakes chocolate cake from scratch, but is scared to answer the door.
I’ll tell you about a teenager who makes $9 an hour washing dishes once a week, but cannot comprehend the idea of a mortgage.
I’ll tell about a 15-year old with the naiveté of an 8-year old.
Tell me how people with autism lack empathy, and I will hold in my hands a stack of Band-aids he unwrapped when is brother cut his finger.
Tell me how special-needs children are marginalized in society, and I will show you my rare bird in his gilded cage. His feathers are breathtaking, yet his loneliness fills the very air around him.
I know, you’ve read the articles.
You’ve seen the research.
You’ve heard the statistics.
But have you met the boy?
This boy, he stays with you. You remember him, long after you get in your car and drive away.
You remember how he jumped, and his deep voice, and the careful part in his thick brown hair.
Mostly, you’ll remember what he told you.
He might tell you that the last time he had a baked potato, he covered it in cheese.
Or how a heavy rain makes him think of teardrops.
Tell me everything you know about autism.
And I will show you a sun in full light.
I thought I wanted ordinary things.
There are no guarantees.
Tell me everything you know, and I will tell you everything I know. That’s the best way, I think.
You see, I’m not sure we’ll ever know everything thing there is to know about it. For now, the tapestry is our road map. Not the beautiful, organized front, but the messy, chaotic back.
It is real.
It is raw.
It is honest.
It is lovely.