This piece 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.
Communication Breakdown: Hacking Autism Provides a Dose of Technology
Part I published in Autism Speaks October 17, 2011
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.”
“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…”
“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…
Communication Breakdown: Hacking Autism Provides a Dose of Technology – Part II
First published in Autism Speaks
October 21, 2011
We arrived at HP’s Executive Briefing Center and strolled into a crowded lobby, where I was given a press pass with my name on it! Well, it may have been a name tag, but I’m choosing to believe it was a press pass.
“Are we late for breakfast?” Alex asked. “I want bacon. I’m going to be very disappointed if there isn’t bacon.”
We filed into a large conference room where I grabbed some yogurt and a cup of coffee. There wasn’t any bacon. Alex was very disappointed.
Kat and I took a seat in the front row next to Alex, who was already clutching his camera, ready to record the coming events. James Taylor (Director, Experience Marketing, Personal Systems Group, HP) stepped behind the podium. I’d been introduced to Taylor the previous evening. Several hours after meeting him, I accidentally referred to him as James Brown. “Sorry,” I said, “wrong musical genre entirely.”
Taylor made a few introductory remarks before clearing the stage for Phil McKinney, the bearded fellow from Hacking PDD-NOS… er… Hewlett-Packard. McKinney spoke of his daughter, a speech pathologist who has worked with autistic children in Rwanda. It was her passion which inspired his involvement in Hacking Autism.
McKinney became visibly emotional while discussing the lack of resources in Rwanda and other underdeveloped countries. Often unaware of my own feelings, I find public displays of emotion to be a bit alarming. I may have cried once or twice while watching ET: The Extraterrestrial – alright, I cry every time I watch ET – yet remove the homesick alien and I’m about as weepy as Hannibal Lecter.
I leaned towards Kat, and attempted to use my library voice, “Why is that dude crying in front of all these people?” Kat promptly elbowed me in the ribs. Apparently, my library voice did not escape the detection of HP’s Vice-President – don’t judge me, I was in the first row!
“Our mission is to give people with autism a voice, and the ability to participate and contribute,” McKinney declared, his vulnerability suddenly replaced with trembling conviction. “People on the spectrum are valuable members of society!”
My goodness, I thought, how on earth do neurotypicals shift emotions so rapidly? Where do they keep all those feelings?!
Politely controlled applause followed McKinney offstage. Other speakers replaced him, one by one. Andy Shih (Vice President, Scientific Affairs, Autism Speaks) began his presentation with a brief description of autism spectrum disorders, and the genetic and environmental factors which may contribute to their origination. He then proposed that genetic testing will soon be used to diagnose autism. Though clearly of scientific mind, Shih took care to emphasize the importance of training, services and support.
I missed Shih’s conclusion – I really had to pee – but determined to catch up with him later for an interview.
I hurried back from the bathroom, arriving just in time for the opening of a compelling presentation by Peter Bell (Executive Vice President, Programs and Services, Autism Speaks). Bell was handsome and reserved, yet boyishly enthusiastic; the high school quarterback, all grown up, and wearing a suit. I recognized him from an appearance on Autism Talk TV. Though every other detail of the episode escaped me, I remembered that Bell’s mouth had seemed rather dry – being autistic, I have both supersonic
hearing and an oddly selective memory.
Pete must have had a glass of water before speaking at the hackathon – his voice was strong and clear. After detailing the troubled history of the autism diagnosis, Bell suggested that social and scientific enlightenment will create a brighter future for the autism community. “We are entering the age of hope.”
If autism is, indeed, experiencing a renaissance, Bell has good reason to celebrate. His son has a diagnosis of PDD-NOS. “At home, we say PDD-NOS just means the doctor couldn’t make up his mind,” he grinned. Though he has retained his optimism and sense of humor, it is evident that his son’s struggles have impacted Bell enormously.
I thought of something Marc Sirkin had said to me that morning, “Peter has come a long way. He’s been through a lot, and has fought hard to make more services available for autistic adults. Our organization has changed because of Peter. He wouldn’t let up. He did it for his son.”
I looked over my shoulder, thoughtfully surveying the conference room. It was crowded with developers, photographers, writers, and people in suits with long, boring titles that would later clutter up my article (Super Chief Executive, Important Corporate Stuff, His Royal CEOness…). Many members of the crowd had been personally affected by autism. The bleeding hearts were easy to separate from the contractually obligated attendees – their professional restraint could not hide their reluctant hope. These were the people with a stake in the game.
Bell continued, discussing the recent explosion of autism awareness in popular culture. “The face of autism is changing,” he stated. “It is no longer a childhood disorder. 500,000 children with ASD will become adults in the next decade. Autism Speaks is now focusing on advancing the future of autistics by providing services.
The four pillars of Autism Speaks are family services, science, awareness and advocacy.”
Heavily criticized for my involvement with Autism Speaks, I could not pretend Bell’s organization was without its share of opponents. Where did Autism Speaks fit into this age of hope, of social and scientific enlightenment? Did Hacking Autism represent a greater step towards acceptance and the provision of services?
Shannon Kay (Director, May Center for Child Development) further clarified Hacking Autism’s aim to “use technology as medicine.” Technology as a treatment for autism? I found the simplicity of this concept to be striking and brilliant – Duh, why hadn’t I thought of that?
“Technology,” she said, “allows for easy access to a wide vocabulary, and offers non-verbal autistics a portable voice. I have seen technology build a bridge between people with disabilities and their non-disabled peers.”
I am lucky. I have never been without a voice. On my worst days, autism may cripple my spirit, leaving me isolated by invisible barriers… yet I’ve never been without hope. A bit of technological medicine would likely make my life more convenient. Convenience is nice, but many autistics are awaiting treatment to make life bearable.
It was time for the application developers to split into teams. Kat and I stood, and followed the flow of traffic. I realized that I had not seen Kat smile once that morning. “What’s wrong, Kat?”
“Nothing,” she said, dismissively.
“Can’t you at least pretend to be happy? I pretend to feel things all the time.”
She paused and stared at the floor. Her eyes were blank. Her skin was pale, almost translucent, like a drop of milk spreading slowly in a glass of water. “I know you do,” she said. “You pretend to understand me. You pretend to care about me.”
“I care about you.”
“You don’t know me. You can’t recognize my emotions. I’m not a character in a movie. I can’t always say my lines the way you want me to. My emotions aren’t invalid just because they don’t make sense to you.”
“Your emotions don’t make sense to me right now.”
“I don’t like playing the supporting role to your lead. I don’t like coming second to your obsessions. You can talk about pharmacology or old movies for hours, but when I talk, I’m lucky if you even pretend to listen. I want to share my feelings with you, but I know