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

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…

  1. October 21, 2011 at 12:27 pm

    Wow….lucky Kat….

  2. Sue Rodgers
    October 21, 2011 at 12:27 pm

    Scotty, I hope you can work things out with Kat. There has to be a middle ground. Fake it til you make it. Blessings to you. Look forward to the next part.

  3. October 21, 2011 at 2:07 pm

    I too hope you can work things out. If Kat should happen to read this, please know that appearing not to care, and actually NOT caring are definitely not the same thing. I wonder if people feel this way about me.

  4. John Scott Holman
    October 21, 2011 at 2:42 pm

    All will be revealed in part III.

    I do care about Kat. I always will. We speak radically different love languages. Relationships are very difficult for people on the spectrum. I am not immediately aware of my emotions. I am impulsive, obsessive and hyper-logical. Emotions aren’t logical, no matter how much I try to make them logical.

    Kat is a good person, unfortunately she did not realize what she was getting into. She was never able identify the social symptoms of my autism and learn to tolerate them.

    She is learning, just like we all are.

    Scotty

    • funnygirl
      October 22, 2011 at 5:49 pm

      I would point out that it was I who first suggested you had Asperger’s. To say I “was never able identify the social symptoms of [your] autism” is a bit misleading. I just have a hard time blending those social symptoms that I read about and see in movies into my own context- my own life. Just sayin’. -Kat

  5. Suzy
    October 21, 2011 at 2:50 pm

    I know where Kat is coming from. Coming to the realization that the aspie man you care about will likely never “get” you can be quite an eye opener and feel devastating….and no, I am not nt. Not an impossible situation but certainly difficult.

  6. Trish
    October 21, 2011 at 5:47 pm

    Wow….. This instalment has me really thinking on how my 8yo son deals with emotions…. he doesn’t, he can’t.
    And as for technology being used, that would certainly aid my 6yo non-verbal son.

    Thanks again for sharing.

  7. JudgeRoy
    October 21, 2011 at 10:37 pm

    Indeed it is hard to show someone you care for them when it’s difficult to verbalise exactly how you feel, and at times might forget to consider their emotions because you are caught up in a high – like indeed you were. I know what that high feels like. I used to be a concert photographer and would get over excited at the atmosphere of the venues that I’d get in the way of security and staff and road managers. Eep, the road managers were and still are the scariest. Heck, I get the same high being in a super market.

    I’m enjoying this review. Looking forward to the next part.

    p.s: I approach this theory of mind deficit between autism and NT dating in my novel.

  8. ictus75
    October 22, 2011 at 12:58 am

    A great read, looking forward to the next part. It’s almost like reading about a younger version of me.

    And Kat, Aspies can care a lot, we just don’t know how to show it.

  9. October 22, 2011 at 5:59 am

    I can understand the problem as I was not diagnozed until my late 70’s, though for years before then, I suspected I was somewhere within the autism spectrum. In retrospect I realise my dad was autistic, but years ago no-one knew about the condition. My son is autistic and could not speak until he was 9 or 10 years old. He is 57 now and a university graduate. Best of luck John and Kat – you deserve to be happy.

  10. enchantedsleeper
    October 22, 2011 at 7:33 am

    Awww… I understand why Kat feels the way she does but I know where you’re coming from as well. I hope that it works out for you guys :/ Can’t wait to read the next instalment and find out more about Hacking Autism. You’re a brilliant writer!

  11. Myra Marshall
    October 22, 2011 at 9:54 am

    You are a gifted writer! Can’t wait for your first book.

  12. diana gordon
    October 22, 2011 at 10:01 am

    Kat’s descriptions struck home, hard. My 17 year old son, diagnosed with AS when he was young, acts the same way with me most of the time. He will talk about all the things that interest him for hours. We encourage his independence help him develop a wide-range of interests. But when I try to talk about myself, he looks as if I’m wasting his time. He’s repeatedly told me there’s no reason to get emotional during a play because “those are not real people.” (He adores the theater, sees as much of it as he can, oblivious to cost and the time it takes my husband and I to make it happen.) The few times I’ve really broken down crying out of love, out of frustration, hurt, use whatever adjective you like, he acts as if my emotions make no sense and, again, are simply a waste of time. He does understand that if I’m physically injured, or someone important to me dies, that he should and does comfort me. For awhile. Then it’s back to his agenda. Right now he’s given up on any hope of finding a girl-friend. He thinks it’s too complicated and, because most relationships end, why set yourself up for pain. I hope once he leaves for college he meets people who will accept him and help him open up emotionally.

  13. John Scott Holman
    October 22, 2011 at 12:10 pm

    Shanti (JudgeRoy),

    I’m very interested in seeing how you tackle the theory of mind deficit in your novel!

    Scotty

  14. Willow
    October 22, 2011 at 12:16 pm

    I’m both in Kat’s and Scotty’s shoes (yep, def split personality disorder, LOL). To both of you: Scotty….sometimes you have to come off your ceiling & listen….Kat…sometimes you have to say “STOP, it’s my turn!”. Knowing that it’s not deliberate (all the time) and that it is HARD….for both of you. Don’t give up, either one of you ;) And sometimes, Kat….as supporting cast members (*wink) sometimes we have to walk offset & take some “me” time. It’s ok. I do totally understand and empathize: I’m the wife of and mother of two wonderful ASD guys….who totally suspects that she, too is on the spectrum ( Lord help our family!). But honestly I wouldn’t have it any other way!!!

  15. starling99@wydebeam.com
    October 22, 2011 at 12:45 pm

    I have two children with Aspergers and was married to a “rocket scientist” for 25 years with Aspergers. My exhusband is brilliant, talented, and ambitious, HOWEVER, he cannot reciprocate, empathize or see someone else’s perspective. I am no longer married to this man as I could no longer tolerate the lack of emotional support while he sought out sex with anonymous women. He has been labeled “sociopathic” and “narcissistic” by counselors & psychologists. He was diagnosed with manic/bipolar 9 years ago. He has been charged with “sexual harrassment” (doesn’t understand physical boundaries) and removed from his employer by police and/or securityguards during his “rages/meltdowns” (more than once). Kat needs to run as fast and far as she can from you….relationships with Aspies are nothing short of a living hell…..this has been my experience.

    • Willow
      October 23, 2011 at 12:34 pm

      Personally I think NTs are more than a little skewed! I keep them at a distance :) So sorry you’ve been so damaged starling99. Good luck out there.

    • November 1, 2011 at 2:12 pm

      I’m sorry that you had such a bad experience, starling99, but that doesn’t mean that all aspies should be tarred with the same brush… for one thing, it sounds like your husband had other problems beyond just being an aspie. And “Kat needs to run as fast and far as she can from you” is also an extremely hurtful thing to say to someone on their blog. If you want to talk about people not seeing things from others’ perspectives, then think about the effect that your words might have on someone before you say them. Internet or no internet, aspie or not, we’re all human and we all have feelings.

      Sorry to lecture, I just feel strongly about that. Best wishes for everything though.

  16. October 22, 2011 at 12:45 pm

    Thank you so much for sharing – i really appreciated the eloquent expression of both the partner’s feeling as well as the aspie’s perspective. i have family members who have expressed these very same frustrations to me- it is sometimes very difficult for the genders to understand one another already due to our difference in what we value and prioritize. but the added layer of autism makes it even harder for a neurotypical woman- focused on emotions and feeling understood and prioritizing empathy- to connect with and understand her aspie husband and son- less able to interpret emotion correctly and not displaying affection or “caring” in the way the woman is used to or understands it being displayed.

    diana gordon i also really appreciated your post- again a very honest, eloquent expression of what many of us feel often while loving our aspie family members.

    • funnygirl
      October 22, 2011 at 5:37 pm

      In reference to “both the partner’s feelings”, I would just like to make clear that I did not contribute to this article. It is all from “the aspies perspective.”‘ – Kat

  17. Lisa
    October 22, 2011 at 1:08 pm

    It’s difficult when you’re husband/wife or significant other is on the spectrum. I too am married to a man with autism. We didn’t either of us realize it until after our daughter was diagnosed and we learned more about what autism is. It is extremely hard to relate at times. He is very goal orientated often to the exclusion of the family dynamic, often inflexible and my emotional needs make no sense to him.

    Example: While pregnant with our 2nd child I commented I was feeling ungainly and unattractive and he answered, Yes but don’t worry you’re pretty when you’re NOT pregnant.

    It IS difficult. It will always be difficult, but we’re both trying. What else can you do when you love some one? Our daughter is completely non-verbal. I love her completely and she helps me to love and understand her father during the rough patches.

  18. John Scott Holman
    October 22, 2011 at 2:01 pm
  19. October 22, 2011 at 5:01 pm

    Starling99,

    That is a very sad story. However, it is important to emphasize that not all aspies are like your ex-husband. I have always been rigidly faithful. I’m something of a serial momogamist.

    I can not say I have always been emotionally supportive. That is where most aspies will have difficulty. I try my best, but emotions change rapidly and are very difficult for me to understand.

    I do not have immediate access to my own emotional states. That is not my fault. I do the best I can to work with my emotional displacement and delays.

    I hope you are finding happiness and satisfaction in your current life. Being an aspie does not give anyone the right to be a jerk.

    Scotty

  20. starling99@wydebeam.com
    October 22, 2011 at 6:14 pm

    LOL Lisa, my aspie exhusband said things that were just as hurtful; some were even more hurtful. I would NEVER recommend that either of my aspie children marry or even have a “relationship” with anyone. One child is a very talented artist and the other is a very accomplished engineer. They both desire relationships but are very socially inept. God forbid they ever have children!! I also have two NT children who actually know how to connect with people, so I know it is possible in my family. Being married to an aspie for 25 years, as we moved multiple times across the country due to his job losses, was enough time spent with someone that could care less about my well being. Everything was always “all about him”. I am an elementary special education teacher, with lots of “academic” experience with autistic students, and unfortunately aspies do not mature emotionally, EVER. They are a perpetual kindergartener (5 year old), never progressing into emotional adulthood….sad but true. They are emotionally retarded…yet many times intellectually brilliant. John Scott you are an accomplished writer, however it is obvious in your writing that everything is “all about you”. I sure hope that Kat has found her way, far away from you.

    • October 24, 2011 at 10:34 am

      starling99@wydebeam.com :
      LOL Lisa, my aspie exhusband said things that were just as hurtful; some were even more hurtful. I would NEVER recommend that either of my aspie children marry or even have a “relationship” with anyone. One child is a very talented artist and the other is a very accomplished engineer. They both desire relationships but are very socially inept. God forbid they ever have children!! I also have two NT children who actually know how to connect with people, so I know it is possible in my family. Being married to an aspie for 25 years, as we moved multiple times across the country due to his job losses, was enough time spent with someone that could care less about my well being. Everything was always “all about him”. I am an elementary special education teacher, with lots of “academic” experience with autistic students, and unfortunately aspies do not mature emotionally, EVER. They are a perpetual kindergartener (5 year old), never progressing into emotional adulthood….sad but true. They are emotionally retarded…yet many times intellectually brilliant. John Scott you are an accomplished writer, however it is obvious in your writing that everything is “all about you”. I sure hope that Kat has found her way, far away from you.

      That could very well be the most insulting thing I’ve ever read. We are not perpetual kindergartners as you put it and to not wish your children find someone that understands them and they would want to spend the rest of their lives with is insulting to your children as well!

      • Willow
        October 25, 2011 at 8:46 am

        Right on, Dan. I tried to be polite….but Starling just doesn’t get it….is she SURE she’s NT & “mature”?????????????????????????????? Get a CLUE Starling99……you are THE most insulting person alive. You should be ashamed. I feel for your children. You’re the one I’d move far, far, FAR away from!

      • October 25, 2011 at 4:45 pm

        I thought the same thing Willow, but I was hesitant to say so. I may have my problems with my two kids, like any parent does, but I would never not support them, or call them emotionally retarded, or intimate that they should never find a mate, or that no mate should have them or want them. If that is the attitude of a special ed teacher, I thank God even more that I have the means to homeschool. After a few rotten tries at relationships, I finally found someone who loves me for me and doesn’t expect me to be something I am not. I am going to do my best to train my kids the best way I can, and maybe they will find a path through all the people who think they aren’t worth having to find the one who will think they are worth everything.

      • Willow
        October 26, 2011 at 8:42 am

        Thanks, Mira :) I held my typing fingers in check hthe first round; but twice….no way! I too have had my share of rotten relationships, along with the good….& would you guess who I found? An AFA who loves me for ME….faults & all & is the hardest worker I’ve ever known! Sure wish I could say I have what it takes to homeschool my son; but alas I dont ( and for him, the socialization is crucial!). I don’t wish anything rotten on my son, but think that the process of finding love (and finding whats NOT) will make him a better person in the long run! God bless you for perservering & showing your children what it’s all about ;)

  21. October 26, 2011 at 2:40 pm

    Scotty,
    This paragraph tells me you do have empathy: “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.” You also understand the vast difference between Aspies like yourself and people with severe autism. Parents like me who search for a “cure” do so because life is not always bearable for our children and the future is so uncertain for them as they grow up unable to function in society, unable to survive without 24/7 care. I don’t speak for all parents but the kind of Autism you have is not what we are trying to cure. I think you understand that. Thank you for your insights into the Aspie mind & keep the articles coming!

  22. November 1, 2011 at 11:13 am

    Willow, you might have what it takes to homeschool. As far as socialization, what do you mean by socialization? If you mean they might never learn to sit quietly in a chair with 30 other kids they aren’t allowed to talk to, and pretend to be interested in a textbook that is far less interesting that a cardboard box, then that is true. If you mean that they won’t have friends, or play sports, or go to prom, or spend time with other kids, then you have bought into the public school myth.

    My daughter, 14, is out with friends almost every weekend. She’s going to a fall dance this week dressed as the Tardis from Dr. Who. Every Thursday and Friday she has co-op classes with other teens. She is in choir and drama, She likes a boy, who is also homeschooled.

    My son, 11 has Fun Friday with his Wednesday tutorial once a month. His group also went on a field trip last Tuesday. We have a Thanksgiving lunch planned for this month. We went to Washington DC with that group on a “school tour” last April. We are planning a trip to Williamsburg for next spring.

    Of course, you are right, it’s not for everybody. I am just saying if socialization is a cause of concern for you, you might look again.

    • Willow
      November 1, 2011 at 6:24 pm

      Thankyou, Mira. I appreciate your vote of confidence:) I get too easily frustrated; not being able to express myself in a manner that would enable another person to learn easily, for one. The socialization end of it is that I believe my son needs that peer input; although right now it’s just not working out for him! I learned that “his class hates him & fears him”….from my observations his teacher ignores him & has him along the wall, facing the wall & not the classroom (to minimize distractions???? who knows). *sigh* He is simply OVERWHELMED & the school does not seem to be willing to meet his sensory needs at this point :( It’s being pounded in that that is what he needs & the education specialist they hired is basically being left out! arrrrrrrrrrghhhhhhhhhh! Anyone know any good lawyers in western Montana that are child advocates?

  1. October 24, 2011 at 3:31 pm

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