The Many Faces of Autism

Last Thursday night, I wandered downstairs after we put the kids to bed to zone out in front of the computer for a while. It had been a rough night on top of a pretty crappy day.

First, I had to stop by our local police department to pick up a form. Not just any form, but a form to tell them about 11-year old Jack.

If there’s anything I can file under the category called Things I Never Expected To Do As A Mother, it would be stepping up to the desk in the lobby of the police department and telling a woman I need the form to explain my son has a diagnosis of Autism Spectrum Disorder so if he ever runs away from me for real or jumps out of the moving car instead of just threatening, then the officer on duty will have some background.

After that I stopped at Kohls to look for a pink cardigan sweater for my daughter and khaki pants for the boys. I decided they also needed belts. But then I started to think about how Jack can’t really manage a belt because his fine motor skills still aren’t great and if he had to go to the bathroom in the middle of church or math class and someone wasn’t there to help him, well, that could be bad.

So I left with nothing.

On my way home I stopped at the grocery store. I was piling red apples into a plastic bag because my 7-year old, Henry, loves red apples all of a sudden, and my phone rang. When I looked at the caller ID and saw the school’s number, I felt sick.

Jack had an incident at recess. He was upset, and he asked to call me.

Jack’s made two friends this year—two sixth grade boys. They meet on the playground, they play made-up games. They call themselves “The Group.” For someone who has been friendless for most of his life, this is a very big step.

It is also complicated, and mysterious, and confusing. It makes him anxious, trying to untangle the mysterious web of social interactions.

Now there is a newcomer, a lovely, bright boy who would also like to meet on the playground and play made-up games and be considered a part of “The Group.” And Jack feels threatened—jealous.

“They are for MAGNETS TOGETHER,” he screamed into the phone, his voice rising on the last two words.

“Okay buddy, calm down. What happened?”

“They are mine. Mine friends. Not HIS.”

He made it through the rest of the day at school, but when he got home he was in a foul mood. He refused to do homework. He shrieked and hid when our neighbor rang the doorbell. He barely ate anything during dinner.

After his bath he came to me and said, “For my ear. Is wrong.”

Over the past few days I’d noticed he’d been picking behind his earlobe with his finger in a nervous, twitchy way. When I looked, I saw he had rubbed the skin raw. 

And right before he huddled under the covers with his six pillows and his two bunnies and his weighted blanket, he screamed, “I hate you. For you make me a loser.”

He tells me this a lot lately. Sometimes he mixes it up with a little bit of, “You are the worst mother EVER,” or, “Don’t TEST ME.”

Sure, he scripts a lot and steals phrases from movies after-school specials and shows on Nickelodeon and then parrots them as his own, but the intent is there, even if the comprehension is lacking.

Last December I wrote about how different Jack has become, how I couldn’t wait for his return.

Wasn’t I just so precious? I was adorable. Really, I wish I could travel back in time three months and hug my stupidly naïve self.

Because it’s been three months, and he’s still gone. Or, not gone, exactly, but changed. New. He is not himself, but a another self—a prepubescent, angry, twitchy self.

Like the sun in the sky, he swings wildly between hot rage and spring warmth, icy cold hatred and colorful laughter.

My kids are getting older. Now they’re busy with more and activities; cross-country, basketball, running club—even Henry plays baseball. Everyone is involved in something, except Jack.

Often it’s just he and I in the afternoons, sitting alone together in the bleachers, or on the sidelines, or driving in the car as we ferry the others to different fields and friend’s houses.

April is Autism Awareness Month. Or is it Autism Acceptance Month? I may have even read the title World Autism Day somewhere.

When I think about autism awareness, I don’t think of blue lights or bumper stickers or puzzle-piece ribbons. I think about Jack and me sitting on the cold metal bleachers at my son Charlie’s football practice.

I think about the way I gently tap his fingers to remind him to stop biting his nails, and the way he asks about Chipotle ninety-seven hundred times.

I think about the way he picks and rubs and bites at his ears and his skin and his eyes, as though he wants to erase himself altogether.

I think about the rest of our lives with this disorder and this boy.

I think about how badly I want people to hear him, and see him, and know him.

Autism Spectrum Disorder is a neurological disorder characterized by impaired social interaction, verbal and non-verbal communication, and restricted and repetitive behavior. It is believed that one in sixty-eight children are identified each year.

Yet these statistics–this diagnosis–are only the beginning. They are a black and white sketch, an outline, a rough draft.

I want to know more. I want to color inside and outside the lines, and bring the numbers to life.

I know how I would describe Jack. I would say he is rigid and wily and nervous and funny and sad. He is vulnerable. And he thinks tortilla chips dipped in guacamole is just about the best thing in the world.

Some days I feel as though it’s just me and this boy all alone in the universe, spinning and twitching and jumping. It is maybe the loneliest thing in the world, mothering my Jack-a-boo. I long for a glimpse of the rest of the one in sixty-eight.

What do they look like? Do they eat ice cream after dinner? Are they curious about spiders? Do they dance to Bruno Mars or sing out loud to Justin Bieber? Do they play Minecraft?

Are they happy or angry or sad or scared?

I asked people on Facebook to post one word that describes the people of autism in their lives, and to share a picture if they wanted. And these are the words they used for the sons and daughters, brothers and sisters, neighbors and grandchildren and students who navigate the slippery spectrum bell curve every single day.

Charismatic.

Energetic.

Opinionated.

Misunderstood. Mysterious.

Imaginative. Inquisitive. Innocent.

Unbreakable.

Introverted zebras surrounded by horses.

Dog lovers and cat huggers—cookie bakers and advocate-makers.

Cancer survivors.

Special Olympians.

Boy scouts and ballerinas and singers. Young boys who fish in ponds.

Twins with sparking blue eyes and wide, wide smiles.

Precious and pure. Loving, and loved. Gifted, and also a gift.

Unpredictable, sensitive, happy, joyful.

Sad, and lonely, and frustrating.

Kind and tumultuous and confusing and curious.

Literal.

Enigmatic. Unique.

A college graduate, a Chewbacca-lover.

Tough and loud and irreplaceable and genuine and amazing.

Sweet. Adored, yet lonely.

A human sponge, soaking and learning everything the world has to offer, yet at the same time a teacher.

Sassy.

Complicated. Courageous. Compelling, like a brilliant, shining light.

A vibrant rainbow, a tender-hearted superhero, and hot, buttery popcorn.

Blessings in disguise, and also full of surprise.

Entertaining.

Awe-inspiring and awesome.

Determined.

Fascinating.

Protective, full of self-expression.

An earnest, social whirlwind.

Remarkable, life-changing, brilliant, overwhelming.

Colorful. Dynamic. Wise, and intense.

Supercalifragilisticexpialidocious.

Brave. Gentle. Unexpected.

Anxious and worried and restless and scared.

Funny and fun. Mercurial. 

Creative. Inquisitive. Quirky. Determined.

Golden and colorful and luminous.

Unpredictable.

Hopeful.

A winding, zigzagging paradox—consistently inconsistent.

Young and not-young, tall and not-tall, talkative and quiet.

More. More sensitive. More fascinating. More special. 

People posted pictures of the most beautiful, endearing, charming, adorable faces you’ve ever seen. Jack and I looked at each one together. With each new picture, he would ask, “Him? He has for autism too?”

And I would say, “Yes, buddy, just like you.”

These faces, they are the one in sixty-eight. They are neurology. They are black and white letters on a form and numbers dancing across a graph.

If I could, I would take a bunch of Magic Markers and write every single word on the biggest billboard I could find. I would use every color in the box. All day long, people would drive their cars and ride their bikes and walk their dogs past and read it.

And once I finished writing all the words in my loopy cursive, I would add ten more at the very bottom—two sentences that combine autism and awareness together like chips and guacamole.

A dark-haired boy with glasses spoke them into the quiet of an empty classroom, a few minutes after recess had ended.

“Jack, no one can replace you. You’ll always be our friend.”

Happy forever autism awareness acceptance day, everyone.

(Note: Jack and I tried to fit as many pictures into the video as we could. We’d love to see more and hear more and know more, if you’d like to share in the comments below, or here on Facebook.)