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

October 17, 2011 27 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.

“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.

*Dedicated to my sister Kassidy, who would have been 16 years-old today. I hope that my writing makes her smile and laugh. I will never stop missing the sound of her laughter.

“I rode the BART here.  I pushed the disability button and saved 75 cents!”

Alex Plank, the 25 year-old founder of wrongplanet.net, squinted thoughtfully behind his bottle cap glasses. “I wanna rent a car to take us to the event though,” he continued.   “Who’s paying for it? We should get a limousine… or a Hummer!”

Alex and I had flown to San Francisco to attend an autism hackathon.  Hacking Autism aims to use free technology to give people with autism a voice.  Teams of developers had been assembled for the hackathon, and would spend the day creating touch-enabled applications.  Alex was hired to document the event on video. I would be assisting him and gathering information for an article.

Before shaking hands with Alex, I had never met another autistic adult. I felt like a domesticated puppy, the only canine member of my family, on my first trip to the dog park. Sitting in the apartment of writer Steve Silberman, we observed each other quietly, getting comfortable with one another before engaging in a casual conversation which a neurotypical observer might have mistaken for a heated argument.

Alex’s frosted hair was spiky and disheveled, as if he had emptied a can of Aqua Net onto his head while standing in a hurricane simulator.  He wore tight black jeans, a studded belt, and a flannel shirt. “This shirt was worn on the show Entourage,” he said. “I bought it at a wardrobe sale. You like it?”

“Sure,” I said. “Which character wore it?”

“I dunno… I’m pretty wrapped up in Dexter right now.”

“Maybe you should get a shirt from that show.”

“What’s wrong with this one? I thought you liked it?”

“I think it is about time to call a cab,” Steve intervened. Steve was interviewing Alex and I for a book about the autism diagnosis and the rise of the neurodiversity movement. Simultaneously interviewing two longwinded and enthusiastic autistics proved challenging and the interviews were postponed.

“I want to rent a car,” Alex said.

“Fine,” Steve replied, “but you’d better hurry. You don’t want to be late for the event.”

“What event?” I asked.

“Um… the event you are writing about…”

“Oh yeah, that event!  Steve, do you think I’ll get a press pass? I’ve never had a press pass. This is so exciting!”

“Should I just Google expensive limousine service?” Alex asked.

“Let’s try to be as economical as possible,” Kat suggested. My girlfriend, Katherine, had come along to San Francisco as well. Her presence proved to be a good investment; without her intervention, Alex and I may have arrived at the event in a tank used on the set of Band of Brothers.

“Wow, these limousine services are expensive!” Alex said. “I’ll just type in inexpensive car service.”

We bickered over transportation for another hour before finally deciding on a black car service. The driver arrived promptly and Steve hurried us out the door.

Kat became nauseous during the ride, and asked the driver to pull over so she could step outside for some fresh air. The driver, a perfect stranger, stood patting Kat’s back on the side of the road, while Alex and I waited in the car, unwittingly modeling the autistic empathy deficit.  “I hope she doesn’t puke…” Alex groaned.  A highway patrol car pulled up behind us. The officer stepped outside, strolled over, and leaned in to speak to Alex and I. “What seems to be the problem?” he asked.

“Oh, don’t worry,” I said, avoiding the officer’s eyes. “My girlfriend is very drunk… and underage.”

The officer grunted in confusion and walked off to speak to our driver. 

“Why did you say that?” Alex asked.

“I dunno,” I said. “I’m bored… Are we there yet?”

Further confusion resulted when Alex discovered that Kat and I had a reservation at a hotel down the street from him. “This will not do. Your hotel is nearly a mile away. How are we supposed to work together… and stay up late talking?”

“Kat, I need you to fix something!” I hollered.

“Babe, I’m sick,” Kat moaned.

“Oh, sorry Alex, it looks like you’ll have to do it yourself.”

“Ok, dude,” Alex said, whipping out his cell phone and calling the hotel. I was impressed; though Alex struggled a bit, he managed to make all the necessary arrangements. We would be staying right across the hall from each other.

We arrived at the hotel, thanked the driver for his patience, and scrambled inside to get ready for dinner. Kat needed to rest, so I joined Alex in his room, where he was clutching an iron and cursing a slightly wrinkled piece of Entourage memorabilia.

“Do you know how to iron a shirt,” he asked.

“No,” I said. “I’ll go get Kat.” Poor Katherine… no wonder she complained of feeling like a frazzled mother. After six hours on an airplane, and three hours with Alex and I, she decided to call it an evening, politely refusing the dinner invitation.

Marc Sirkin arrived thirty minutes later to pick us up and take us to his hotel, where the dinner was scheduled.  Alex was not quite comfortable with the fact that Marc was staying at a separate hotel, but he did not protest.  Marc is the Chief Community Officer for Autism Speaks. Apparently, that is an important position – I like him because he has nice hair and responds to my emails.  “Where’s Kat?”

“She got drunk,” Alex said. “She is underage but the officer didn’t arrest her.”

“I thought Kat was 24,” Marc said.

“She is,” I yawned. “Don’t worry about it.”

The dinner, held in the hotel ballroom, was a far more formal event than I had expected. Everyone appeared to have purchased their attire at a Madmen wardrobe sale (that joke is getting old, but I have a tendency to perseverate). I was wearing jeans, a bright orange stocking cap, and a Velvet Underground t-shirt. I turned to a bearded gentlemen standing beside me. “I think you’re a little overdressed,” I said. “I’m Scotty. Who are you?”

“I’m Phil McKinney,” he said, extending his hand.

“Are you with Autism Speaks?”

“No, I’m the Vice President and Chief Technology Officer of HP.”

“Hmm, sounds fancy. What’s HP? Does that, like, stand for Hacking PDD-NOS?”

“No,” he laughed. “HP stands for Hewlett-Packard.”

“Hubert Packard? Is he here? Have I met him?”

Alex rolled his eyes. I scooped up my seventh shrimp from a tray of appetizers. I couldn’t find a trash can, and my pockets were quickly filling with shrimp tails. It was very hot in the ballroom and I was becoming uncomfortable.

Dinner was finally served and everyone moved to take their seats. I was confused by the lack of assigned seating. “Who wants me to sit at their table?!” I shouted across the room. There was an awkward silence. “Sit here,” Alex said, tugging on my shirt.

“But I wanted to sit with Hubert…”

“Who?”

“Never mind.” I took my seat next to Alex and ordered the pan-seared sea bass.

The dinner conversation was a bit confusing. Everyone was talking about the stock market, politics, and technology – subjects I do not understand.  A ten year-old aspie named Schuyler had been my saving grace during the pre-dinner mingling. Unfortunately, he was sitting with his father at another table.  Finally, the discussion shifted to the topic of autism, and I proceeded to dominate the conversation until dessert arrived. I’m an excellent conversationalist… so long as no one else wants to talk.

“Have you heard from Kat?” Marc asked.

“No,” I sighed. “I think she is mad at me. She was sick and I didn’t know what to do. I need someone who understands emotions to go talk to her.”

After the dinner, everyone broke into groups to continue discussing things I couldn’t understand. Alex and I chatted in a corner.

“So your girlfriend is mad at you?” he asked.

“I think so. I feel guilty. She wants to believe I’m capable of a normal, adult relationship, but I’m just not. I’m autistic – nothing will ever be normal for me. I don’t understand her and she doesn’t understand me. I try really hard to explain myself but everything gets lost in translation.”

“Tell me about it!” Alex said. “People don’t understand why autistics like us just don’t understand.”

“I like to think of myself as pretty high functioning, but I can’t avoid these communication breakdowns. Do I seem high functioning to you?”

“Dude, you’ve got so much autism it isn’t even funny. That’s alright though, ‘cause I do too. We wouldn’t be sitting here if we didn’t.”

“Thanks. You’re a good friend, Alex.”

“Don’t mention it. You want to go to the gym and work out?”

“Um… its almost midnight. I’ve been up since three o’clock this morning.”

“Great, nothing beats a good workout.  I’ll tell Marc we are ready to go. I wonder what kind of equipment they have. How much can you bench?”

Marc drove us to our hotel and we worked out until one. We got lost on the way back to our rooms. We couldn’t find anyone to show us the way, which was probably good; two sweaty, disoriented autistics on the verge of a meltdown would have likely frightened the other guests.  It was nearly two o’clock when I finally climbed into bed. Kat was upset, as I had suspected, but I was too exhausted to talk about it.

We woke up bright and early for the hackathon.  Though the previous day had been drizzly and overcast, California sunlight poured into the room, split into warm shafts by the venetian blinds. I was filled with happy-go-lucky autistic enthusiasm. Despite many hours of research, I still didn’t quite understand what a hackathon was. I was about to find out.

To be continued…

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