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Communication Breakdown: Hacking Autism Provides a Dose of Technology – Part III

October 24, 2011 23 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Read Part I and Part II

“Communication Breakdown: Hacking Autism Provides a Dose of Technology” is a highly personal representation of an exciting event, and a rare and detailed glimpse into an autistic mind.  Holman’s account is unprecedented in autism journalism.  More than a simple, factual record, it is an artistic statement – one autistic interior on display.  The situations and dialogue within this story are colored by the author’s heightened self-awareness – reality becomes a mirror to reflect the isolated inner world of autism.  This world is rarely communicated to an audience.  Holman offers autistic journalism, seen through the narrow lens of a pop-culture soaked imagination.  This is journalism in technicolor.

Alex was growing frustrated.  “The lighting in here is awful!  I can’t work with this!  And why are all these people so noisy?  Can’t they see we’re filming?!”

It isn’t easy to be an obsessive autistic.  Our lives are often governed by a single, narrow pursuit, and anyone with a separate agenda is simply in our way.

“What are they doing that is so important?!” Alex fumed.  “We’re making a movie!  Who invited all these people?”

“Um, those are the developers,” I said.  “I think they are kind of important.”

Andy Shih sat before us, quietly observing our executive dysfunction.

“I have an idea!” I declared, climbing onto a nearby table.  I kicked aside a stack of brochures, and lifted an imaginary bullhorn to my lips.  “QUIET ON THE SET!” I bellowed.  My library voice can be heard by anyone within a mile radius.  You can imagine the thunderous volume of my announcement.

The room fell silent.  I hopped down from the table, quite pleased with myself.  “I’ve always wanted to say that!”

I took a seat before the camera, excited to begin the interview.

“Get a little closer to Andy,” Alex said, squinting into the viewfinder. I slid closer, bouncing and fidgeting.

“Closer…” Alex said.

“Closer?!  You want me to sit in his lap?”

“Please don’t…” Shih stammered.

I had never conducted an onscreen interview.  I felt like the dude from Inside the Actor’s Studio!  I waited for Alex’s cue.

“Alright, make it happen guys!  One… two… three… action!”

My first interview went rather well – I barely interrupted at all.  The footage will be available when Alex wraps up post-production.  Alright, Plank, stop reading this article – you’ve got a movie to edit!

I thanked Shih and wandered off to abduct someone important for our next interview.  Luckily, I was distracted by a group discussion in the dining area.  Marc Sirkin, Peter Bell, and Steve Silberman were gathered together in heated debate.

“Do I hear opinions?” I said, plopping into a nearby seat.  “I’m sure you’re all wrong.”

“Nice to see you again,” Steve said.  “We’ve been discussing autistic self-advocacy.”

“Uh oh,” I groaned.  “The last thing we need is a pitchfork wielding mob parading through Alex’s shots.”

Marc laughed.  “It is a controversial subject.”

“Has anyone seen my soapbox?” I said, looking about.

“Huh?”

“Oh, I’m already standing on it… Black and white thinking is a recognized symptom, and one which casts a troubling shadow over autism politics. We’re not characters in some autistic version of Star Wars.  This isn’t about heroes and villains… though I wouldn’t mind seeing Peter here cross light sabers with Ari Ne’eman.”

“Do I get to be in the movie?” Marc asked.

“You’re a storm trooper… but your scene was cut.”

“Autism Speaks has made mistakes.  We’re all learning.  Autism was poorly understood when I was a kid.  I lived 24 years without a diagnosis.  Awareness is spreading.  It is only natural to see more people being diagnosed.  We finally know what to look for.”

“Aren’t you offended by the notion of a cure?” Steve asked.

“I don’t know what that means, and I’ll give five bucks to anyone who can offer a simple explanation.”

No one made a sound.

“Anyone?  Mark?   Bueller…?  Bueller…?”

I’d have to remember this little challenge the next time Alex needed a quiet set.

“Good, I’m broke anyway. Autistic pride is great, but we need to remember those who can’t advocate for themselves, or communicate at all.  The promise of a cure brings hope to many devastated families.”

“False hope?” Steve asked.

“Maybe, but people need hope.  More importantly, they are willing to pay for it.  We may never find a cure, but there is no telling what will be discovered along the way.  Knowledge is a powerful asset.  I’m not opposed to genetic research, but I’d like to see a greater emphasis on services and support – that’s why I’m sitting here with you fine people!”

The conversation continued for some time, everyone offering valuable insights.  I realized, quite suddenly, that precedents were being broken all around me.  For far too long, the autistic community has been relegated to either side of a massive, ideological divide.  In that moment, we were unknowingly constructing a bridge.  This was truly an unlikely meeting of minds, and a rare dialogue.

Progress depends on the cooperation of many.  Communication is the first step. 

I thought of Kat.  “Has anyone seen my girlfriend?”

I found Kat doing homework in a corner of the lobby.  Her frustration was evident.

“You want to come get some more pictures?” I asked.

“I got some already,” she said, without looking up.

“Well, we could  always use more.”  I was trying my best to include her.

“I’m studying.”

“Kat, what’s wrong?”

She sighed and closed her book.  “You know,” she said, “you’re a lot like Alex.  I guess I never truly realized…”

“Realized what?”

“Never mind,” she said, reopening her book.

I stood awkwardly for a long, silent moment.  “Oh, there’s Phil,” I said.  “We have to interview Phil!”

It seemed the day would never end, and I didn’t want it to.  I sat down for many more interviews and conversations, all of them fun, fascinating, and fleeting…

I was living my dream, and feverishly taking notes, a longstanding outsider recording his moment on the inside, trying desperately to capture a dream and keep it forever.  I knew I would wake up soon enough.  Like Cinderella, I was afraid to enjoy an expiring spell.  The stroke of midnight would not reveal my elegant coach to be a pumpkin, but I knew my press pass would look an awful lot like a nametag when the day was over.

I wanted to share my happiness with Kat – it was too abundant for me to keep to myself – but she was nowhere to be found.

I ran into Marc, who told me the development teams had completed their applications.  “Have you seen Kat?” I asked.

“Didn’t she tell you?  She walked back to the hotel.”

I followed the crowd into the conference room and slumped into a chair.  The developers presented their applications, brilliant technological tools which would enable communication for countless autistics.  I tried to pay attention, but I was confused and exhausted, lost in my own communication breakdown.  One developer presented a bonus application, which he had created on his own while the rest of his team worked together.  That was me, always doing my own thing, lost in my own obsessions, while the rest of the world worked together.

I sat on the edge of Alex’s bed.  “You feeling alright?” he asked.

“People come and go,” I said.  “At first they like me.  They want to help me.  After awhile they realize that I’m not going to change.  They get angry… then they leave.”

“I’m glad you’re my friend,” he said.

“Thanks, Alex.  I’m glad you’re my friend too.”

What else could be said?  It had been a long day.

The San Francisco airport was nightmarishly crowded.  The line through security seemed to stretch on forever.  “Kat, I really don’t like lines.  I’m going to tell them that I’m autistic so we can go through the short line.”

“You’re going to play the autism card just because you’re impatient?” Kat scoffed.  “No one here likes lines any more than you do.”

Ashamed, I followed Kat to the end of a massive, slow moving crowd.  “This isn’t so bad,” I said, attempting to be cheerful.  But it was bad; the line never seemed to move and the swaying herd of travelers was closing in on me.  I began shaking my legs and flapping my hands.

“Stop it!” Kat hissed.  “You’re embarrassing me.”

“Sorry… I just… I really don’t like lines.”  I could feel the sweat on my forehead.  I couldn’t breathe.

I was on the verge of a meltdown by the time we reached security.  Kat went first, making it effortlessly to the other side.  I was alone.

“Sir!” a large, threatening security guard shouted at me.  “Your bag won’t fit.”

“What are you talking about?!  They said I could carry it on!”

“You can carry it on, but it won’t fit through the x-ray tunnel that way.  You have to turn it around.”

“Huh?” I was baffled.  I couldn’t make out the guard’s words.  I stood there stupidly, my heart beating out of my chest.

The guard grunted, and stormed past me.  He lifted my bag, rotated it, and set it back on the conveyor belt.

“I’ll need you to remove your hat,” he said, sternly.

“My hat?!”  I really hate taking my hat off.  Hats are a sensory comfort, and I feel vulnerable and anxious without one.

“Sir,” he thundered, “I need you to remove your hat!”

“I HEARD YOU!” I screamed.  The entire airport fell silent.  I’m surprised I wasn’t arrested on suspicion of terrorism.

I didn’t speak to Kat until we had boarded the plane.  We found our seats, and I regained my composure.  Finally, I turned to her.  “Kat?”

“Yeah.”

“A relationship, I think, is like a shark. You know?  It has to constantly move forward or it dies.  And I think what we got on our hands is a dead shark.”

“That is a quote from the movie Annie Hall,” Kat said.  The disdain in her voice made me shudder.

“It is…?”

“You know it is.  It’s from the scene where Alvy and Annie break up on the flight back from California.  Are you using stolen Woody Allen material to break up with me?”

“No, I’m not trying to break up with you.  I just don’t know what to say.  I’ve never fought with a girl on a flight back from California.”

“Life isn’t a movie!”

The plane’s air conditioner was on the fritz.  The heat was oppressive.  Passengers were fanning themselves with barf bags.  “This must be what the Amazon feels like,” I muttered.  I caught sight of a stern looking stewardess several rows ahead of me.  “I WANT MY MONEY BACK!” I shouted towards her.

Giggles erupted throughout the plane.  “You’re not nearly as funny as you think you are,” Kat scowled.  “Stop embarrassing me.”

Now I was mad.  I cleared my throat, and began singing at the top of my lungs, “I’m dreaming of white Christmas…”

The passengers howled with laughter.  “I hope you’re happy,” Kat said.

“One of us has to be, at least once in awhile.”

“You said you were afraid of living in a world that didn’t include me, but you never did!  You’re too wrapped up in your own world!”

“That isn’t fair.  I warned you about this.  I tried to make you understand.”

“Oh, so now it’s my fault?  I didn’t research autism enough?  I wear a puzzle piece around my neck every day!”

Kat was crying now.  I knew that I should comfort her, but I was too angry.

“No, you did plenty of research,” I said, sarcastically.  “You put on a necklace and now you understand me!”

Kat’s face went blank.  I couldn’t read the emotion in her eyes.  Was she sad?  Angry?  Scared?  Her hands trembled as she ripped off the necklace and threw it to the floor.  I watched a tiny silver puzzle piece dance down the aisle… as everything faded out around me.

My parents drove me to the emergency room.  Kat had left me at the airport.  My typically inaccessible emotions had built up over the trip.  They came erupting to the surface, all at once, in a meltdown to end all meltdowns.

I paced frantically, up and down the ER lobby, flapping my hands, gnashing my teeth, and breathing heavily.  I was finally sedated.

I spent the next five hours crying in a hospital bed.  My mother sat beside me, stroking my head.  “Don’t leave me here,” I begged.  “Don’t let them put me in a mental hospital again.  Don’t leave me…”

“I’m not going to leave you,” she said.  “I’m never going to leave you.”

“But Kat left me.”

“I’m sure she had her reasons,” my mother assured me.  “Relationships are tough.  She is young and confused.  She didn’t mean to hurt you.”

I thought of the closing line in Annie Hall, “After that it got pretty late, and we both had to go, but it was great seeing Annie again. I… I realized what a terrific person she was, and… and how much fun it was just knowing her; and I… I, I thought of that old joke, y’know, the, this… this guy goes to a psychiatrist and says, ‘Doc, uh, my brother’s crazy; he thinks he’s a chicken.’ And, uh, the doctor says, ‘Well, why don’t you turn him in?’ The guy says, ‘I would, but I need the eggs.’ Well, I guess that’s pretty much now how I feel about relationships; y’know, they’re totally irrational, and crazy, and absurd, and… but, uh, I guess we keep goin’ through it because, uh, most of us… need the eggs.”

Kat was right, life isn’t a movie.  It doesn’t always follow the script you’ve written in your head.

Life is difficult… but love is worth it.  I know that I am loved, and that I love in return.  I may have difficulty communicating my feelings, but I feel deeply nevertheless.  I have learned that no matter how irrational our emotions may be, they are always valid.  We must understand if we are to love, and we must communicate if we are to understand.

In an article called Where Have I Been All My Life, written shortly after I met Kat and received my diagnosis, I expressed the beauty and pain of living on the autism spectrum.  ‎”To have Asperger Syndrome is to feel as if you roam the world in an antique diving suit, cut off from everyone. Though something of what others say can be interpreted, their words are muffled by a devastatingly beautiful, frightening and complex symphony. This has been the source of both my lifelong joy and solitary despair, for as much as I would like to share this music, it seems no one else can hear it.”

I love who I am, and I will keep following the music.  I may be marching to the beat of my own tone deaf drummer, but the music makes me happy.  Perhaps, one day, I will find the words to share this music with someone else.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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