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

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

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…

  1. John Scott Holman
    October 17, 2011 at 2:04 pm

    Visit my Facebook page for links to my other articles about autism…

    http://www.facebook.com/pages/John-Scott-Holman/267958723228267

  2. Sue Rodgers
    October 17, 2011 at 2:13 pm

    Scotty, your writing is so funny, yet so true. Maybe that’s why it’s so funny. Thank you for being so honest, about life, about your relationship with Kat. I sure hope you showered after your workout. -Just the mom of an autistic speaking there. Hygiene often gets forgotten. Keep up the good work and don’t forget to love on your girl once in a while. She needs that to keep going as well. -another mom bit.

  3. John Scott Holman
    October 17, 2011 at 5:39 pm

    I had SO much fun at this event and am so glad to have made so many great friends! Alex is awesome and hilarious! Steve is so kind and smart! Marc has nice hair and responds to my emails.

    I am hard at work on Part II.

    What an adventure!

  4. Barb
    October 17, 2011 at 11:05 pm

    Ha ha. Very funny. Alex sounds great! It is nice that you guys are working together. I’m excited to see what happens in the future.

  5. October 18, 2011 at 8:15 am

    What an awesome blog. There is a lot of matter about the technology. You should be hungry to do new….
    Wedding Car Hire Melbourne

  6. Faithers12878
    October 18, 2011 at 8:56 am

    Another awesome article. I was laughing hysterically at work because I have had a lot of those same moments. Too true on the communication side I dont get it either! Cant wait to read the second half – was laughing way too much at the gym part – I move furniture at 1 am if the mood strikes me :P

  7. October 18, 2011 at 10:51 am

    My beautiful daughter Jen is a 34 year-old woman with autism. She is non-verbal, exhibits extreme pica behavior, wears an alarm bracelet on her wrist because she tends to elope from situations and has no fear of danger. She wears adult diapers. She can feed herself , but must be watched to assure that she doesn’t stuff food in her mouth until she chokes. Thankfully, Jen is physically healthy(except her wisdom teeth are being dealt with which is a major concern as the last time Jen had novacaine she bit deeply into her tongue). She laughs and smiles and is happy being around the staff of the day-hab she attends ,or the group home where she resides.
    My point to the author of the article-you’re not seeing “classic Autism”. Do a little more research and you will see individuals who have SEVERE SOCIAL AND COMMUNICTION PROBLEMS due to their autism. I would be glad to let you enter my family’s world of autism which is totally different from what you have portrayed in your article.

  8. John Scott Holman
    October 18, 2011 at 11:39 am

    Hey Mark,

    Autism is a spectrum. I am merely one person on that spectrum and I cannot claim to represent anyone but myself. I know that I could be worse off. I would represent classic autism in my writing, but I am not classically autistic, and am only trying to portray my daily challenges and success as honestly as possible.

    My heart goes out to you and your daughter Jen. I wish you both all the best.

    Scotty

    • October 18, 2011 at 12:09 pm

      Thanks Scotty
      I appreciate your kind thoughts and don’t mean to downplay anybody’s autism. Just trying to speak up for some of those individuals who cannot do it on their own , and let the world know that they are out there.
      Markl

  9. John Scott Holman
    October 18, 2011 at 12:46 pm

    Mark,

    If you go to YouTube and type in “severe autism” you will find a very eye-opening series of videos.

    This is not a simple issue. Many autistic self-advocates seem to think that by speaking for themselves they are speaking for all autistics.

    Some autistics suffer enormously as a result of their autism, while others are able to lead happy and successful lives. Autism is not always a curse. It is not always a blessing. Sometimes it is a mixed bag.

    There are times when I become frustrated and wish I was not autistic. Everyone gets down on themselves. I must remember that things could always be worse.

    I am proud of myself. I wouldn’t want to be anyone else. This kind of attitude is not easy to come by – it takes hard work.

    Thank you for advocating for your daughter.

    Scotty

    • October 18, 2011 at 9:11 pm

      Hey Scotty

      You should be proud of yourself for all that you do.
      I’m very proud of my daughter Jen.She has touched the lives of many people , bringing them both joy through her innocense and unbounded happiness for what she loves(Raffi, Mr Rogers, swimming, eating,…), and a realization of how thankful they are for what they have.
      We are all in this together and I wish you the best also.

      Mark

  10. Sadie
    October 18, 2011 at 6:38 pm

    you are so funny! Great Job John, I can’t wait for part 2! My son Jake is 6 years old and he loves to crack jokes, you remind me of him with always being Comical. Tell Kat hi and can’t wait to hear more stories!!!

  11. Eva Mills
    October 18, 2011 at 6:50 pm

    Thank you so much for writing this blog. As a grandparent raising a 5 yr old with Austism, I hope he can become someone like you that can teach us by example. You have a great gift, thank you for sharing your life experiences. I hope you and Kat have many happy times together.
    Eve

  12. Laurie
    October 18, 2011 at 6:54 pm

    I’m intrigued…. Just opened a residential treatment center for autistic male youth aged 10 to 14. I’ll share my favorite saying with you, “different, not less”……..

  13. Trish
    October 18, 2011 at 7:06 pm

    This had me laughing and crying simultaneously. Really gives me hope for my sons who both have Autism.

    I just love this comment

    “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.”

    That sounds like something my older son would say to my younger son and not even think twice about it.

    Thank you so much for sharing.

  14. Sharon Robertson
    October 18, 2011 at 7:33 pm

    Such cool dialouge! My 20 year old son is autistic and can talk about so many things that people have called him a walking encyclopedia. I don’t have to google, I just “Jeff” as I often say. But for all of his knowledge, he struggles with relationships and real conversations. He wants so much to have a girlfriend. We are working for that. God bless you…keep the conversation going. People need to know this.

    Sharon

    • Sue Rodgers
      October 19, 2011 at 12:33 pm

      Sharon, Our 20 year old son sounds like your 20 year old son. We too say let’s “Chad” it, instead of google. And, like your son, struggles with relationships and reciprocal conversations. Scotty is an inspiration to other young adults. He’s very cool, too.

      • Sharon Robertson
        October 24, 2011 at 9:46 pm

        Sue, my son has a lot of friends who think he’s the greatest and he’s an inspiration to others as well…but they don’t ever see the down side…the sadness and the meltdowns…my heart aches for him! BUT, we will not give up!!! I was told he’d probably never talk or be able to take care of his personal needs. Indeed, he didn’t start to talk until around age 6! I have so much admiration for anyone who lives in the world of autism…it’s an awesome world full of wonder and heartbreak. I didn’t choose to be here, but now that I am, I can’t imagine living anywhere else! Blessings to you and yours!

  15. Oma
    October 18, 2011 at 7:53 pm

    I loved both reading your article and the comments following. You have not only a gift for writing, but a gift of empathy. I can tell you’ve worked very hard to get where you are now, John, and that’s remarkable, My heart go out to Mark and Jen also. Thank you for sharing, too, Mark.

  16. October 18, 2011 at 8:16 pm

    Scotty,

    Your motivation and enthusiasm is encouraging. My name is Rachael and I have an 11 year old brother named Jacob who is severely autistic. Jacob is learning how to function in society, but it’s a slow process. His vocabulary grows everyday and while he knows the words that he’s saying, sometimes he still doesn’t quite know how to say it. Communication is a huge barrior for him. Jacob always had issues communicating how he felt, both physically and emotionally. Recently, Jacob turned to video games that used something called “hit points” to describe how he was feeling. When he gets hurt, physically or emotionally, he deducts hit points from himself.

    Anyways, he creates and edits videos and is really into the entire gaming environment. He is usually on YouTube, but lately YouTube has shown to be a very bad influence as some of the members are just very inappropriate and Jacob began to mimic their behaviors. I’ve had to practically take YouTube away from him because it escalated so far. I can see it in Jacob everyday in his behaviors that he feels cut off from the world and isolated, and I wish I could help. I am not sure if this is your area or if anyone seeing this may know a way to help, but I’m looking for an online community designed for gaming and chatting about video games for those with autism. It was his only way that worked for him to connect and express his feelings and talking to just his family still leaves him feeling lonely. I’m not entirely sure if this kind of community even exists.

    I apologize for taking up any time or for any burden this may have caused. I just thought I would throw that out there and again, you really are an inspiration.

    -Rachael.

    P.s.- Anyone with any information, I can be reach at Facebook (I know, I’m lame) at http://www.facebook.com/HelloBreakdown

    Thank you!

  17. JudgeRoy
    October 18, 2011 at 8:29 pm

    Sounds like you had fun. Shrimp in the pockets, lol. It is really hard to represent the whole spectrum because each end is staggeringly different and even some people on it with the same sub-type are different. I’m classic, not severe, but today I’m a completely different person than I was 10-15 years ago. In the last few years I’ve learnt more than I ever have in my life.
    I’m looking forward to reading Part II!

  18. October 19, 2011 at 3:10 am

    Love your writing :)

  19. Rachel A Smith
    October 19, 2011 at 3:43 am

    I love reading your stories, they give me great hope that my little sister, Becca, will grasp some ability to turn the words and names she knows into clear words and maybe full sentences. She has come very far over the past year; her medications are right, FINALLY, and she isn’t violent to others, now. Her focus is better and she has started to match colors together, and she laughs and smiles more.
    Conversation is something I am looking forward to have with her, I too have a communication barrier; hearing impairment.

  20. John Scott Holman
    October 19, 2011 at 12:48 pm

    Mark,

    Thanks for your kind words (and thanks to EVERYONE else as well). I thought you might be interested in this quote, taken from a column I write for wrongplanet.net.

    “If you are capable of reading and understanding this blog, then congratulations, you’re not so bad off! Many autistics can neither read nor speak, and face overwhelming pain and frustration in their daily lives. Those of us with impaired social skills, rather than no social skills at all, would do well to count ourselves among the blessed and stand up for those who cannot advocate for themselves.”

    Scotty

  21. John Scott Holman
    October 19, 2011 at 8:15 pm

    Come “like” Alex’s Facebook page…

    http://www.facebook.com/pages/Alex-Plank/103305485194

  1. October 24, 2011 at 3:31 pm
  2. December 6, 2011 at 10:11 am

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,054 other followers

%d bloggers like this: