Who’s That? Don't Be Afraid

2016 PTA Reflections Contest State Award of Excellence
Excerpt published in Autism Parent, Issue 67, p. 45

Shuffling along, grabbing tightly to my mom, hands over my face to shield against the sun, humming tunelessly to screen out the noises assailing me, I must frighten you. "Who could that be?" you might ask yourself. I am someone just like you, thinking sadly, "I wish you'd ask." This is my chance to tell you my story about dealing with autism. What is it like to experience the world without any filters? To act in the world when your body won't obey you? To understand, and have no way to tell anyone? To battle monsters when the monsters live inside you? This is your chance to find out what autism feels like, at least for me, and for you to see who I really am.

A Million Pieces

A rosy blush spreads across the sky
I walk arm in arm with my mom.
The last warm fingers of the afternoon
wrap around my face as the sun fades good-bye.
A flock of birds passes high overhead.
I hear them squawking.
Must be parrots.
Suddenly the roar of a motor
breaks into the calm sanctuary of the moment,
like a hammer shattering glass.
The car intrudes and destroys,
rudely crashing into my consciousness.
My feet freeze, I shrink to the side,
gripping onto Mom,
trying to remember
where my head, where my arms and legs were last seen
as I lay scattered here on the street.
Mom says, "You're okay, Peter, keep moving."
I gather up my consciousness like
so many packages on the floor
and laboriously move on.
Instead of reverie, I am all vigilance.

For as long as I can remember, the world has been an unpredictable jumble. My eyes smart with the sunshine, a ball coming toward me multiplies into two as it nears, sounds in a crowded restaurant chatter in my ears like a herd of monkeys. The act of going out feels like running the gauntlet. Now that I know more of what to expect, getting through the environment is somewhat less overwhelming. But I still feel very anxious in crowds and noisy places. I depend on Mom and friends to navigate me through them.

Inside a Faulty Avatar

Heavy lead, dead-tired limbs,
Do you belong to me?
Every effort is a push,
no, a shove
from my mind.
I am sick of flogging this dead horse.
You brought the warm towel.
My body gladly bounded out of bed-
Hurrah! The Great Escape!
Then, diving back into bed,
a great GOTCHA!

Getting my body to obey me, like getting out of bed, is really hard. My upper brain has a shaky start switch. Sometimes it takes a lot of attempts to get started. But my lower brain works just fine. I usually drag my feet to get from the parking lot to the church. But once there were big platters of doughnuts on some tables outside. Suddenly before I could stop myself, I dashed to the tables and grabbed a doughnut. Everyone was shocked. They didn't even know I could run. Sometimes I try to use my lower brain to get my body to do what my upper brain wants it to. If I feel like tapping on my swim goggles, I might ask Mom to put my goggles in the bathroom to get my body to move from the bed to bathroom. In the poem, Mom tried to use my lower brain to get my body to get out of bed to avoid the washcloth on my face, but it backfired when it saw a chance to outwit her and dive back into bed.   Tricky business, harnessing lower brain power.

Another trick I use is imagery. I love to ski. So sometimes when I feel stuck getting out of a car, I imagine I'm approaching the end of a ride on the ski lift. "3-2-1, tips up, bow forward, stand up," and I'm out!

I also move better when I work together with someone, like when Mom rinses and I load the dishwasher. I borrow her energy from the rhythm of the work. I sometimes even forget I have autism when I dance with Mom. Bet you wouldn't have guessed how I'm a pretty good ballroom dancer. 

The Ladder

Early memories,
Mom, I see your smiling face, soft brown eyes,
and gentle voice.
But it was just sounds.
I heard lots of sounds.
Just hated the confusion. Hurt my brain.
Only I did like your voice, talking to me.
Not to others- the fast conversation
was grating to my ears.
But when you talked to me, only me,
I heard domes, valleys, sails
welling with meaning.
There was joy in that one;
warm happiness would fill my heart.
A stern edge;
better pay attention.
So the sounds slowly took recognizable form.
Like a sculptor carving a man out of a shapeless rock,
ABA helped my brain to see the forms.
After dreary years, I could understand most.
It was a secret I wished you could guess,
but you couldn’t.
No one knew.
When you’d say, “Throw that away and come over here,”
My feet would not move.
I was stuck, but I understood.
But who could tell?
Hot frustration like a volcano
would flow at times.
You simply didn’t know why.
I was in Alcatraz.
I prayed, “God let me out of this silent prison! Let me out!”
Then it happened.
An angel picked up my hand, and the words took shape on the screen.
Darlene asked me, “What party does the President of the United States belong to?”
“Democrat,” my fingers replied.
I could type!
The ladder dropped in, the prisoner climbed out, 
my heart opened to the world,
And Dad fell out of his chair.

Learning to communicate has been my greatest triumph in my struggle with autism. Now that I can talk through typing, I can show what I know. So whereas I was doing third grade work at 13 years old, I am able, four years after learning to type, to study Dickens and Dante, and am taking honors chemistry. I can join in discussions with my peers at bible study and Confirmation, play poker with my brothers, and Mafia with my cousins. Most importantly, I can talk to other people so that they can see who I really am.

Surfing Polarities

My body wants peace, but I just can't find it.
My hands try to shake out the unreleased energy
as it explodes out my fingertips,
and I slap the table.
Squeeze me tight,
I need help regaining my composure.
Keep my brain tricked.
It calms down like
placing a hot iron in a bucket of water,
Sizzle!
I am doing better now.
The wave has crashed around me.

My greatest challenge currently is dealing with strong waves of emotion. If anxiety and OCD were a barking dog when I was little, it morphed into a wild dog as a teen. It's something I battle everyday with logic, deep breathing, and stretching myself to take little steps in the opposite direction. If I feel anxious about staying in the noisy classroom, can I stay in chem class   just five minutes longer? Can I walk away from that silly paper I feel compelled to grab off the shelf? Can I write one more sentence before repeating my compulsive request to go to the store? I've learned that if I can just distract myself long enough, the tidal wave will pass over me. I feel like I'm learning how to surf, and am riding the waves longer and longer.

There have definitely been a lot of challenges in my life, learning how to put together millions of pieces of sensory bombardment, operate the faulty avatar of my body, surf tidal waves of emotion, and break out of silence. But my story is not predominately about battle. I recognize a lot of gifts in my life. When I told about learning to communicate, I used the word "triumph," but learning to type was really a gift from God. I had tried to type on a keyboard many times before I had prayed, but couldn't. I really believe it was a miracle. 

I also thank God everyday for my family. Mom made learning fun. I loved the ski trips, family trips to national parks, bike rides and hiking, swimming, gymnastics, dancing, music, great times.  Lots of times I've felt like a canvas splattered with dissonant colors. But now I see a picture emerging. 

Family portrait

Beautiful sister
holds my hand,
waiting to paint
colorful pictures in music.
My bear brother
holds me tight,
safe from the monsters
raging inside.
Gentle scholar brother
abandons the laboratory
faithfully
every Saturday,
patiently punching Chinese characters
into my iPad and
drilling me on yufa.
Mr. Elvis-hair, music man brother
acts cool,
but quietly carries in the groceries I should have.
My football king brother
gets me up the bike hills and down the ski slopes.
And little Luke
throws up his hands
and grimaces,
but lets me hog the TV.
If my brain is full of potholes,
Mom fills in the gaps.
She makes the hard and narrow path
bloom with flowers.
When I start lagging,
Dad drops back.
Then we sail up the hill, his hand against my back,
the wind.

So my story is not predominately a battle tale though battle I do daily. It's not all about struggle and hard work, though struggle I have. My story is mainly about the love of many people poured into me. I hope I can give back a little of the great love I have received. That's what I'd like to do more than anything else, to help other families find their kids through loving understanding. So if you see me shuffling along, don't be afraid. Someone just like you is passing by. Someone with hopes and dreams and people he loves. Maybe we could get to know one another, share our stories, and help one another live out our dreams. Maybe we could be friends.