Communication Breakdown: Hacking Autism Provides a Dose of Technology – Part II
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.
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 that you won’t care, because you don’t understand. We don’t communicate. We can’t…”
“Kat, where did this come from? I…”
“You ready to get some interviews?” Alex appeared suddenly at my side, his eyes bright and eager.
“Yes!” I said, seizing the opportunity to escape an argument. I grabbed Alex by the arm and led him away. “Say Alex, isn’t Gary Busey autistic?”
“I don’t think so. I’ve never thought about it.”
I could feel Kat’s eyes on me as I walked away. My stomach sank, just for a moment, before I quickly forgot my uneasiness. The day was only beginning. I was more than excited – I was dancing on the ceiling. Life looked perfect from my deliriously distant perspective. Everyone else looked like ants circling my feet. I had no time for them. I was far too high to think of coming down.
To be continued…