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Posts Tagged ‘Hacking Autism’

Healthcare, Technology and Autism converge at CES 2012

January 24, 2012 5 comments

This is a guest blog post from Marc Sirkin, Autism Speaks VP Social Marketing and Online Fundraising. He recently attended CES to support the launch of a strategic partnership with Careverge.com.

CES (Consumer Electronics Show) is big, really big. Crazy big. The annual show hosts some 140,000 attendees and features some of the most incredible technology, gadgets and ideas that shape how we interact with our world. The main purpose of my attending was to support a recent partnership between Autism Speaks and Audax Health’s Careverge [link]. Starting back in October, when we held the first “Hacking Autism” event technology has been on my mind, and as we saw on that incredible day, mobile apps and tablets are literally transforming the autism experience across the autism spectrum. It’s led me to start asking what I think is a great question: “How will new digital technologies and digital platforms transform the lives of those on the spectrum today and in the future?”

We continue to try to answer that question at IMFAR, our Core77 competition and have some exciting news to share in the days ahead about what’s next for “Hacking Autism.” I’m thrilled here to blog about a new partner, Careverge.

Careverge as you’ll see and hear in the video below is on the forefront of the “digital health” revolution. Spurred on by massive consumer pain and ever spiraling health care costs, entrepreneurs like Grant Verstandig, the Founder and CEO of Audax Health are bringing together a combination of technological ideas and experience, social networking, data analysis and gaming to create innovative and frankly, incredibly cool solutions.

I don’t know how Careverge will help you and your family but I suspect that you’ll come up with new ways to use the service.  There are already more than 200 members of the “Autism Speaks” community and now it’s your turn.  If you believe like I do that technology can and is making a different TODAY for all those on the autism spectrum, please register on the Autism Speaks Careverge site and and send us your feedback!

Technology, Apps, and Autism

October 24, 2011 6 comments

Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

Leslie Stahl reported how people with autism are speaking and making breakthroughs on this 60 Minutes feature, Apps for Autism.

Do you, or someone you know on the spectrum, used assistive technology to help communicate? Are there any applications you favor? What are some pros and cons of using assistive technology for those on the spectrum?

Can you recommend any apps or devices?


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

October 24, 2011 23 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.

Read Part I and Part II

“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.

Alex was growing frustrated.  “The lighting in here is awful!  I can’t work with this!  And why are all these people so noisy?  Can’t they see we’re filming?!”

It isn’t easy to be an obsessive autistic.  Our lives are often governed by a single, narrow pursuit, and anyone with a separate agenda is simply in our way.

“What are they doing that is so important?!” Alex fumed.  “We’re making a movie!  Who invited all these people?”

“Um, those are the developers,” I said.  “I think they are kind of important.”

Andy Shih sat before us, quietly observing our executive dysfunction.

“I have an idea!” I declared, climbing onto a nearby table.  I kicked aside a stack of brochures, and lifted an imaginary bullhorn to my lips.  “QUIET ON THE SET!” I bellowed.  My library voice can be heard by anyone within a mile radius.  You can imagine the thunderous volume of my announcement.

The room fell silent.  I hopped down from the table, quite pleased with myself.  “I’ve always wanted to say that!”

I took a seat before the camera, excited to begin the interview.

“Get a little closer to Andy,” Alex said, squinting into the viewfinder. I slid closer, bouncing and fidgeting.

“Closer…” Alex said.

“Closer?!  You want me to sit in his lap?”

“Please don’t…” Shih stammered.

I had never conducted an onscreen interview.  I felt like the dude from Inside the Actor’s Studio!  I waited for Alex’s cue.

“Alright, make it happen guys!  One… two… three… action!”

My first interview went rather well – I barely interrupted at all.  The footage will be available when Alex wraps up post-production.  Alright, Plank, stop reading this article – you’ve got a movie to edit!

I thanked Shih and wandered off to abduct someone important for our next interview.  Luckily, I was distracted by a group discussion in the dining area.  Marc Sirkin, Peter Bell, and Steve Silberman were gathered together in heated debate.

“Do I hear opinions?” I said, plopping into a nearby seat.  “I’m sure you’re all wrong.”

“Nice to see you again,” Steve said.  “We’ve been discussing autistic self-advocacy.”

“Uh oh,” I groaned.  “The last thing we need is a pitchfork wielding mob parading through Alex’s shots.”

Marc laughed.  “It is a controversial subject.”

“Has anyone seen my soapbox?” I said, looking about.

“Huh?”

“Oh, I’m already standing on it… Black and white thinking is a recognized symptom, and one which casts a troubling shadow over autism politics. We’re not characters in some autistic version of Star Wars.  This isn’t about heroes and villains… though I wouldn’t mind seeing Peter here cross light sabers with Ari Ne’eman.”

“Do I get to be in the movie?” Marc asked.

“You’re a storm trooper… but your scene was cut.”

“Autism Speaks has made mistakes.  We’re all learning.  Autism was poorly understood when I was a kid.  I lived 24 years without a diagnosis.  Awareness is spreading.  It is only natural to see more people being diagnosed.  We finally know what to look for.”

“Aren’t you offended by the notion of a cure?” Steve asked.

“I don’t know what that means, and I’ll give five bucks to anyone who can offer a simple explanation.”

No one made a sound.

“Anyone?  Mark?   Bueller…?  Bueller…?”

I’d have to remember this little challenge the next time Alex needed a quiet set.

“Good, I’m broke anyway. Autistic pride is great, but we need to remember those who can’t advocate for themselves, or communicate at all.  The promise of a cure brings hope to many devastated families.”

“False hope?” Steve asked.

“Maybe, but people need hope.  More importantly, they are willing to pay for it.  We may never find a cure, but there is no telling what will be discovered along the way.  Knowledge is a powerful asset.  I’m not opposed to genetic research, but I’d like to see a greater emphasis on services and support – that’s why I’m sitting here with you fine people!”

The conversation continued for some time, everyone offering valuable insights.  I realized, quite suddenly, that precedents were being broken all around me.  For far too long, the autistic community has been relegated to either side of a massive, ideological divide.  In that moment, we were unknowingly constructing a bridge.  This was truly an unlikely meeting of minds, and a rare dialogue.

Progress depends on the cooperation of many.  Communication is the first step. 

I thought of Kat.  “Has anyone seen my girlfriend?”

I found Kat doing homework in a corner of the lobby.  Her frustration was evident.

“You want to come get some more pictures?” I asked.

“I got some already,” she said, without looking up.

“Well, we could  always use more.”  I was trying my best to include her.

“I’m studying.”

“Kat, what’s wrong?”

She sighed and closed her book.  “You know,” she said, “you’re a lot like Alex.  I guess I never truly realized…”

“Realized what?”

“Never mind,” she said, reopening her book.

I stood awkwardly for a long, silent moment.  “Oh, there’s Phil,” I said.  “We have to interview Phil!”

It seemed the day would never end, and I didn’t want it to.  I sat down for many more interviews and conversations, all of them fun, fascinating, and fleeting…

I was living my dream, and feverishly taking notes, a longstanding outsider recording his moment on the inside, trying desperately to capture a dream and keep it forever.  I knew I would wake up soon enough.  Like Cinderella, I was afraid to enjoy an expiring spell.  The stroke of midnight would not reveal my elegant coach to be a pumpkin, but I knew my press pass would look an awful lot like a nametag when the day was over.

I wanted to share my happiness with Kat – it was too abundant for me to keep to myself – but she was nowhere to be found.

I ran into Marc, who told me the development teams had completed their applications.  “Have you seen Kat?” I asked.

“Didn’t she tell you?  She walked back to the hotel.”

I followed the crowd into the conference room and slumped into a chair.  The developers presented their applications, brilliant technological tools which would enable communication for countless autistics.  I tried to pay attention, but I was confused and exhausted, lost in my own communication breakdown.  One developer presented a bonus application, which he had created on his own while the rest of his team worked together.  That was me, always doing my own thing, lost in my own obsessions, while the rest of the world worked together.

I sat on the edge of Alex’s bed.  “You feeling alright?” he asked.

“People come and go,” I said.  “At first they like me.  They want to help me.  After awhile they realize that I’m not going to change.  They get angry… then they leave.”

“I’m glad you’re my friend,” he said.

“Thanks, Alex.  I’m glad you’re my friend too.”

What else could be said?  It had been a long day.

The San Francisco airport was nightmarishly crowded.  The line through security seemed to stretch on forever.  “Kat, I really don’t like lines.  I’m going to tell them that I’m autistic so we can go through the short line.”

“You’re going to play the autism card just because you’re impatient?” Kat scoffed.  “No one here likes lines any more than you do.”

Ashamed, I followed Kat to the end of a massive, slow moving crowd.  “This isn’t so bad,” I said, attempting to be cheerful.  But it was bad; the line never seemed to move and the swaying herd of travelers was closing in on me.  I began shaking my legs and flapping my hands.

“Stop it!” Kat hissed.  “You’re embarrassing me.”

“Sorry… I just… I really don’t like lines.”  I could feel the sweat on my forehead.  I couldn’t breathe.

I was on the verge of a meltdown by the time we reached security.  Kat went first, making it effortlessly to the other side.  I was alone.

“Sir!” a large, threatening security guard shouted at me.  “Your bag won’t fit.”

“What are you talking about?!  They said I could carry it on!”

“You can carry it on, but it won’t fit through the x-ray tunnel that way.  You have to turn it around.”

“Huh?” I was baffled.  I couldn’t make out the guard’s words.  I stood there stupidly, my heart beating out of my chest.

The guard grunted, and stormed past me.  He lifted my bag, rotated it, and set it back on the conveyor belt.

“I’ll need you to remove your hat,” he said, sternly.

“My hat?!”  I really hate taking my hat off.  Hats are a sensory comfort, and I feel vulnerable and anxious without one.

“Sir,” he thundered, “I need you to remove your hat!”

“I HEARD YOU!” I screamed.  The entire airport fell silent.  I’m surprised I wasn’t arrested on suspicion of terrorism.

I didn’t speak to Kat until we had boarded the plane.  We found our seats, and I regained my composure.  Finally, I turned to her.  “Kat?”

“Yeah.”

“A relationship, I think, is like a shark. You know?  It has to constantly move forward or it dies.  And I think what we got on our hands is a dead shark.”

“That is a quote from the movie Annie Hall,” Kat said.  The disdain in her voice made me shudder.

“It is…?”

“You know it is.  It’s from the scene where Alvy and Annie break up on the flight back from California.  Are you using stolen Woody Allen material to break up with me?”

“No, I’m not trying to break up with you.  I just don’t know what to say.  I’ve never fought with a girl on a flight back from California.”

“Life isn’t a movie!”

The plane’s air conditioner was on the fritz.  The heat was oppressive.  Passengers were fanning themselves with barf bags.  “This must be what the Amazon feels like,” I muttered.  I caught sight of a stern looking stewardess several rows ahead of me.  “I WANT MY MONEY BACK!” I shouted towards her.

Giggles erupted throughout the plane.  “You’re not nearly as funny as you think you are,” Kat scowled.  “Stop embarrassing me.”

Now I was mad.  I cleared my throat, and began singing at the top of my lungs, “I’m dreaming of white Christmas…”

The passengers howled with laughter.  “I hope you’re happy,” Kat said.

“One of us has to be, at least once in awhile.”

“You said you were afraid of living in a world that didn’t include me, but you never did!  You’re too wrapped up in your own world!”

“That isn’t fair.  I warned you about this.  I tried to make you understand.”

“Oh, so now it’s my fault?  I didn’t research autism enough?  I wear a puzzle piece around my neck every day!”

Kat was crying now.  I knew that I should comfort her, but I was too angry.

“No, you did plenty of research,” I said, sarcastically.  “You put on a necklace and now you understand me!”

Kat’s face went blank.  I couldn’t read the emotion in her eyes.  Was she sad?  Angry?  Scared?  Her hands trembled as she ripped off the necklace and threw it to the floor.  I watched a tiny silver puzzle piece dance down the aisle… as everything faded out around me.

My parents drove me to the emergency room.  Kat had left me at the airport.  My typically inaccessible emotions had built up over the trip.  They came erupting to the surface, all at once, in a meltdown to end all meltdowns.

I paced frantically, up and down the ER lobby, flapping my hands, gnashing my teeth, and breathing heavily.  I was finally sedated.

I spent the next five hours crying in a hospital bed.  My mother sat beside me, stroking my head.  “Don’t leave me here,” I begged.  “Don’t let them put me in a mental hospital again.  Don’t leave me…”

“I’m not going to leave you,” she said.  “I’m never going to leave you.”

“But Kat left me.”

“I’m sure she had her reasons,” my mother assured me.  “Relationships are tough.  She is young and confused.  She didn’t mean to hurt you.”

I thought of the closing line in Annie Hall, “After that it got pretty late, and we both had to go, but it was great seeing Annie again. I… I realized what a terrific person she was, and… and how much fun it was just knowing her; and I… I, I thought of that old joke, y’know, the, this… this guy goes to a psychiatrist and says, ‘Doc, uh, my brother’s crazy; he thinks he’s a chicken.’ And, uh, the doctor says, ‘Well, why don’t you turn him in?’ The guy says, ‘I would, but I need the eggs.’ Well, I guess that’s pretty much now how I feel about relationships; y’know, they’re totally irrational, and crazy, and absurd, and… but, uh, I guess we keep goin’ through it because, uh, most of us… need the eggs.”

Kat was right, life isn’t a movie.  It doesn’t always follow the script you’ve written in your head.

Life is difficult… but love is worth it.  I know that I am loved, and that I love in return.  I may have difficulty communicating my feelings, but I feel deeply nevertheless.  I have learned that no matter how irrational our emotions may be, they are always valid.  We must understand if we are to love, and we must communicate if we are to understand.

In an article called Where Have I Been All My Life, written shortly after I met Kat and received my diagnosis, I expressed the beauty and pain of living on the autism spectrum.  ‎”To have Asperger Syndrome is to feel as if you roam the world in an antique diving suit, cut off from everyone. Though something of what others say can be interpreted, their words are muffled by a devastatingly beautiful, frightening and complex symphony. This has been the source of both my lifelong joy and solitary despair, for as much as I would like to share this music, it seems no one else can hear it.”

I love who I am, and I will keep following the music.  I may be marching to the beat of my own tone deaf drummer, but the music makes me happy.  Perhaps, one day, I will find the words to share this music with someone else.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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

October 21, 2011 32 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.

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…

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…

Collaboration, technology and making things

September 19, 2011 5 comments

This post is by Marc Sirkin, Autism Speaks Chief Community Officer. He spent this past weekend with Autism Speaks staff and a few incredible volunteers at Maker Faire NYC, a DIY conference that featured among other things cutting edge 3D printers, a wheelchair transport vehicle, a life sized mouse trap and a solar powered Carousel. He spent the weekend in a state of surprise, awe and laughter.

Creativity, innoviation and outlandish ideas are alive and well at something they call “Maker Faire.” Autism Speaks, as part of HP’s Hacking Autism initiative had the incredible opportunity to have a booth this past weekend at the event, held at the New York Hall of Science. If you are unfamiliar with Maker Faire, it is the premier event for grassroots American innovation. As the World’s Largest DIY Festival, this two-day family friendly Faire has something for everyone – a showcase of invention, creativity and resourcefulness and a celebration of the Maker mindset.

Basically, it is where kids of all ages go to make and build stuff. You can learn to solder, get a basic understanding of electronics and programming and for the rest of us, it’s an opportunity to get a very early glimpse of what’s to come.

As it relates to autism, it’s an incredible outlet for those interested in math, science, computers, programming and with building things. The Hacking Autism project, which we’ve blogged about before is the perfect blend of what’s great about Maker Faire and the response we got was absolutely incredible. Hacking Autism was launched in June 2011 to seek new ideas for technology applications beneficial to people with autism. Hacking Autism crowd sourced ideas for applications from all across the autism community, including families and practitioners. As demonstrated by the above concepts, the Hacking Autism initiative sought technology-based ideas to open up learning, communication and social possibilities.

After two live web chats (First, Second) the advisory committee selected some of the best ideas which Phil outlined in his talk. You can get a preview of some of the top ideas selected in the official press release.

We met family after family that had connections to the autism community; parents, caregivers, teachers and those on the spectrum themselves. We were blown away by their stories and their need for additional help, services, and software. They were thrilled with the possibilities and the innovation of Hacking Autism.

As I wandered around, I talked to people about autism and technology and met people from different companies who all had connections to our world and to our cause. We made new connections, got new ideas and were inspired by our time there. In the end, as we were packing away our materials and getting ready to head home, we learned that our booth and Hacking Autism had won and editor’s choice blue ribbon – apparently a very big deal! I of course snapped a pic and tweeted it immediately!

In thinking about our time at Maker Faire and the coming hackathon, I’m even more encouraged and inspired to push ahead in these new areas to find new connections, to keep learning about autism and to ultimately find new ways to make a difference for all those touched by autism.

P.S. Joey Hudy stopped by our offices on Friday and was featured at Maker Faire with his 3x3x3 cube technology. Joey is a “maker” and describes himself in the following way on his website, where he sells his creations: “I’m a 8th grade boy. I have Asperger Syndrome. I spend all my time building and making cool stuff.” Follow him on Twitter and visit his website

Hacking Autism 9.13.11 Chat Transcript

September 14, 2011 5 comments

On September 13, the second Hacking Autism LIVE Chat was held, where members of the Advisory Board discussed ideas submitted by the community.

The Hackathon event will bring together Hacking Autism’s Advisory board, experts in Autism, technologist and people on the spectrum. This catalyst event takes the ideas submitted to the Hacking Autism website to a multidisciplinary group to actually create applications for people to use free of charge.

7:00
Good evening!
7:01
Welcome to the second live chat for the HP Hackathon! This chat is text only – you’ll interact with us via the live chat client that you are logged into at different times. Your chat host tonight is Marc Sirkin, Chief Community Officer at Autism Speaks and Alison Dyer, Social Marketing Manager also at Autism Speaks. We have a special group of our advisors also on the chat with us – and we’ll introduce them in a a few moments.
7:01
Comment From Cindy 

Good evening! I’m glad to be at this chat!

7:01
The Hacking Autism Hackathon has pulled together a volunteer group of software developers with leading autism specialists to work together to develop groundbreaking, touch-enabled applications for the autism community.
7:02
Tonight’s chat is all about improving a few of the best ideas and creating a conversation with you about this program. This is the second and last of our scheduled chats. 
7:02
In mid-October, we’ll be at HP offices for the live hackathon, taking the best ideas and matching them up with volunteer development teams to actually build the apps you’ve submitted! So far, we’ve had more than 250+ ideas submitted! Thank you! 
7:03
Have you submitted an idea to http://www.hackingautism.org?
Yes!

 ( 22% )

No, still thinking

 ( 78% )
7:04
The first part of the chat will be fairly structured… we’ll show you 3 separate ideas, and for each idea ask you a few questions and then start to brainstorm on how to improve the idea. More on that in a moment… Meanwhile, I’d like to briefly let you know who you’ll be interacting with tonight from our advisory committee… 
7:05
Phil McKinney – HP PSG CTO 
Jim St. Leger – Intel 
Chris Chirco – Doug Flutie Foundation 
Jennifer Leighton – Spaulding Outpatient Center for Children Read more about all the committee members here:http://hackingautism.org/our-mission/our-team
7:06
Ok, great… here’s how tonight’s chat will work: First, we will present an idea and ask via interactive poll if it is clear what the idea is… the ideas you will review are unedited submissions from the community (that’s you!). Please excuse typos and grammar – I’m sure anyone submitting an app idea was so excited about it that they were more focused on the app than spelling things correctly! 
7:06
Then, we’ll ask for feedback and input on the idea (i.e. do you like it, or not) via the comments. Please note that we’ll try to get to everyone’s questions and comments but there are a lot of folks online with us so be patient!Finally, we’ll brainstorm a little on some good features – just submit your ideas and questions when we prompt you and we’ll share responses with the group as we go… 
7:07
Ok… are you ready? Here’s the first idea…
7:07
Idea #1 Stranger/Danger game
7:07
I would love to see an app(s) that would help teach basic safety skills like “stranger danger”- crossing the street- bike safety- water safety- fire safety….all these skills and drills we teach neurotypicals but not special needs kids focused! I think I would use a method of visual modeling…like little strories of real kids making choices and modeling the specific skill! My son has learned so much from video modeling but I haven’t found any resources for safety skills. 
7:08
Do you understand the basic concept?
Yes

 ( 100% )

No

 ( 0% )
7:08
Comment From Richard Tyson

I like that idea

7:08
Comment From Joanne

GREAT IDEA!! NEEDED!

7:09
What are some of your thoughts on this idea to make it even stronger?
7:09
Comment From julie hudy

great. video and maybe just picture with the action.

7:09
Comment From awilda

so simple and logical

7:09
Comment From Guest

I feel that would be great. Just last week my son ran out into the middle of the street and cam within inches of getting hit. He had no idea what happened just knew that I was screaming

7:09
Comment From Jonathan Ezor

Allowing parents to customize/add situations unique to their environments (city/suburban/rural/etc.)

7:10
Comment From Cindy

I would like to see it be animated, colorful, and interactive. My step son loves seeing vivid images and that captures his attention. I wouldn’t want him not to want to use it because its dull.

7:11
Comment From Peggy

what about children who can’t understand a video?

7:11
Comment From Rachel

Definity the idea from Jonathan! My son would definitly connect better if he was familiar with the area in the situation!

7:11
Comment From julie hudy

maybe even taking picture to personalized it further.

7:11
Comment From Joanne

Keep it Simple get the main idea across… don’t go over board. they dont need it to be overly stimulating to get the point acroos. I like J.Ezors idea partents can pick the isues

7:11
Peggy – great question. Visual interaction could be broken down into single images perhaps?
7:12
Perhaps as kids get older we can have different or age appropriate graphics and images. Seems like a great idea to be able to use the device camera to even further customize things.
7:12
Comment From Autism Help

a capability to insert their picture and become the character in the app. “game”.

7:13
Comment From julie hudy

we used picture boards – that kind of thing worked great.

7:13
Comment From Jerry Scott

It would be good to have an interactive feature with some build in (or external) reward function. That is the child is presented with a situation and is rewarded for making the safe choice.

7:13
Jerry – baic gaming concepts are good, but we’d have to be careful about some kids getting over excited about the rewards!
7:14
Comment From Guest

are these apps going to run on PC’s or tablets?

7:14
Guest… totally depends on what apps we pick and who develops them!
7:14
Comment From Joanne

Yeah Like the Wii where we can create our own person! And I like age approperate too.

7:14
Comment From Donna

It could be as simple as teaching basic boundaries to start.

7:15
Comment From Danny

A reward system seems like a good idea, however, it might discourage the child if she doesn’t get a reward.

7:16
Joanne – great point and.. Mii’s do have basic facial features and expressions. Hmmm!!!
7:16
Comment From Tim Chafos

Rewards, even tokens, work great with our son. Would definitely like to see them in an app.

7:16
Comment From Rachel

My son would just get mad if he didn’t get the reward and probably give up on the game. I like the idea of a wii game though, my son loves the wii and it could be like a game where you move up levels.

7:17
Comment From Joe

Is there a way to build the app so parents have a choice between vivid and monochromatic for those that respond better to more lower sensory stimuli

7:17
OK!! Great stuff.. let’s go on to idea #2…
7:17
Idea 2 Fitness/Therapy tracking app
7:17
I’d love to see an app that helps people with autism track fitness efforts and nutrition tips. PWD are in worse shape than the general population. What is family history- BMI- weight- age- cholesterol? What is their regimen or routine (walks- running- swimming etc). How often? Outcomes? What inclusive programs support them? Meals? Calorie intake?
7:17
Do you understand the basic concept?
Yes

 ( 98% )

No

 ( 2% )
7:17
Comment From Jerry Scott

ref rewards. It should just build on basic ABA principles. Repetition and rewards is how we all learn, and especially our lower functioning kids won’t get it any other way.

7:18
What are your thoughts/idea on this fitness idea?
7:19
Comment From awilda

stay active, sports,getting out in the community.

7:19
Comment From Jonathan Ezor

Remember that many kids on the spectrum are on special diets for whatever reason. If you’re including recipes/food lists, they need to reflect those possibilities.

7:19
Comment From Julie

for my son to engage it has to have some music or animated with relevant sounds – if it is too static or just voice over he won’t engage with it

7:19
Is anyone using existing fitness platforms like Wii or XBox games?
7:19
Comment From Guest

In wii fit, more exercises are opened up as you master certain levels and my daughter finds that rewarding and she love creating mii’s for everyone she knows

7:20
Comment From Sherri

Yes, have tried both of those.

7:20
Sherri – how did they work?
7:21
Comment From Autism Help

Expose the child to various activities and gather info from ther on what the child enjoys. Then cultivate that passion so that it doesn’t become just for fitness purposes but also a learning experience.

7:21
Comment From Cindy

I use Wii Fit, and my step son has a very hard time using programs like that and gets frustrated so I don’t use it.

7:21
Comment From Rachel

My son loves the wii fit, something like that would be great.

7:21
Comment From Sherri

Son can keep up for awhile, but then gets board with them.

7:21
Comment From Donna

I think it is a great idea even for a little older kids especilly for portion control , choices,and exercise !!

7:21
Comment From Jonathan Ezor

We have had success making exercise one of the activities on our son’s afternoon “activity schedule.” It becomes part of the routine.

7:22
Comment From Tasha

ya but what about those on the spectrum that are extremely low functioning and would have to use the most simple and basic apps available…i work with 4 autistic boys, all on diff levels of the spectrum..for one of the boys, this program might work better for me as the caregiver, since i honestly dont think he would be able to grasp the idea of any sort of device as this, however the rest of the boys have already started using communication computers in school and they work fantastic

7:22
Tasha – great point, what a huge challenge.
7:22
Comment From Julie

obviously very different for each child – wii is an option as at home it can be controlled with timers to limit and other visuals

7:22
Comment From Jonathan Ezor

Is it possible to tie a pedometer or other metering in via Bluetooth Serial Port Protocol for data gathering?

7:22
Comment From Donna

It is the difference of how functioning the child is it needs to be looked at in all ranges.

7:22
Jonathan – wow, cool idea. Fitbit is a device like that, isn’t it?
7:23
Comment From Rachel A.

My son loves the Wii and he, too, likes making miis of everyone he knows.

7:23
Comment From Donna V

I use a Wii in my classroom and the one game that I have found ALL of my students love, are the dance games…very basic movements, I have not had a student yet who has not enjoyed it. Very basic, enjoyable music, great for all levels I find.

7:24
Comment From Jerry Scott

Tasha – I think having a fitness app for the caregiver is a great idea. Especially for one’s with multiple PWD to take care of. Tracking who is eating what and exercising how must be a big challenge.

7:24
Comment From Donna V

It would be great to see in an app a feature where you can set up a set amount of work time and then a set break time where it beeps to come back.

7:24
Comment From Jonathan Ezor

Nintendo added a Pedometer (aka Pokewalker) to Pokemon Heart Gold and Soul Silver. Using it opened up levels, new Pokemon, etc. Something like that would be good.

7:25
Comment From Jeremy

I think the games that allow multiple students to play are best. Address social skills as well that way.

7:25
Comment From Cindy

I LOVE the pedometer incorporated to a game and unlocking levels etc.!

7:26
Comment From Jeremy

My students also really like MeMoves – fitness/movement with music!

7:26
Comment From Autism Help

Go for a walk and give a child an old camera. He can take pictures along the way. Then you have something to talk about afterwards.

7:26
Autism Help – what a neat idea.
7:27
Comment From Cory and Kristy

Our daughter works well with music if it has music then whatever it is has her att.

7:27
Comment From julie hudy

Austism help – love the camera idea.

7:28
Comment From Jeffery

In my class we use touch screen computers. They are great!! My students with autism has progressed greatly.

7:28
Comment From Donna

I love the walk idea,me and my son go hiking together it works great !

7:28
Excellent discussin on fitness apps… let’s move on to idea #3…
7:28
Comment From Rachel

Autism help, we do the camera thing already and he loves it, and I love seeing the world from his point of view!

7:29
Idea 3 Advanced calendar/schedulingApp to help you fill free moments in their calendar. Children/parents may put in activities available at home/outside and the app may suggest other activities (at home/outside/PC) time indicationI need a simple calendar app that is separate from the included calendar app on the iPad to use for my son. He has very little sense of time- and he needs an organizer that is simple to use with very little extra stuff with it. We have tried using a paper calendar but with little success. As much as he loves anything on a screen- I think he would be much more likely to use it on the iPad (or an iPod touch if I’m ever able to get one for him). I have searched and searched- and there is nothing out there like this.I’d love to see an app that teaches and tests calendar concepts (days of the week- months of the year- how to read a calendar).
7:29
Do you understand the basic concept?
Yes

 ( 97% )

No

 ( 3% )
7:29
What are your thoughts on this idea?
7:30
Comment From Joanne

great idea

7:30
Comment From Rachel A.

How about a little bell sound when it’s time to go somewhere/do something on a certain day?

7:30
Comment From Julie

would see benefits from such an app – but only if somethings had parent/carer control to be moved/deleted – my son is too good at deleting things he doesn’t liek

7:31
Julie – great point
7:31
Comment From charlene

i would love to see this kind of app, def since my son is very digital and computer oriented

7:31
Comment From julie hudy

Hallelujah – calendar with spots to put pictures of whats happening each day. I used to print them out and make my own calendar!!!

7:31
Comment From Cindy

I think this would be great for older children. Therefore I cannot opine. My 6 year old would have no interest in this at all. However, if proven to work, I’m sure we could incorporate it into our daily routine.

7:31
Comment From Donna

I would like to see an app like that via. voice recording ,then reminds them of it later .

7:31
Comment From Jeremy

yes..the ability to “lock” the app would be nice..like in Grembe’s iReward

7:31
Comment From Jonathan Ezor

Even the high-functioning kids need prompting during school, ideally silently. (e.g. at beginning of period take out materials; 5 minutes before end write down homework)

7:31
Comment From Jerry Scott

My daughter uses a visual schedule at school to help her know what activities comes next. That functionality in a app, tied to alarms and real times would be nice. The droid rings, she looks at it and sees a picture of what she is supposed to do next.

7:32
Comment From Jeremy

Also the concept of changes in schedule would be nice to have built-in

7:32
Comment From Jeremy

Jerry Scott – that sounds more like task analysis than a calendar

7:33
Jeremy – there are a bunch of concepts wrapped into this, you are right!
7:33
Comment From Jonathan Ezor

It would also be great if parents/teachers/caregivers could insert and edit reminder elements remotely, and if the app could incorporate an achievement tracker (i.e. “Did you do this? YES/NO) for both incentivizing and data collection.

7:33
A way to input changes to let users know would be crucial
7:33
Comment From Valentino

Daily life skills !!!!!!

7:33
Comment From Rachel

I homeschool, and I think that if I could record my voice or his grandmas voice telling him it’s time to do something, he would love it, and incorporate pictures of what we are doing that day too!

7:34
A block on the app is key also for the caregiver, as well a way to allow users to create their own schedules to give them a sense of control.
7:34
Comment From julie hudy

wow – sounds like the calendar question has alot of wonderful ideas!

7:34
Comment From Cory and Kristy

We like the calender idea , something like that would help her understand more about days months and years than her day after day routines

7:34
Comment From Jeremy

There are apps out there that do some of these functionalities, but it would be nice to have one app that does it all!!

7:34
The concept of time might be worked in here as well – something that counts down to the event/tracks the passage of time.
7:35
Comment From Jeremy

It would be nice if there was a module too for child to review/discuss their day with parent/teacher

7:35
Comment From PKB

Love it! Schedule, reminders, transition prep. all rolled into one.

7:35
Comment From Jeremy

My students complete a daily journal each afternoon to take home

7:36
Comment From Julie

i would implement something like this for my 3.5yr old – he is ready I just don’t know the best way to proceed – if it was on the iPad he would be more interested that wall charts etc

7:36
Comment From Jonathan Ezor

One thing that’s clear from this chat, and in all of these types of efforts, is that autism is not “one-size-fits-all.” Both high- and lower-functioning kids on the spectrum benefit from technology. Just not the same type.

7:36
Comment From Jeffery

Rachel your idea is great because the teachers are absent sometimes and if they had the voice with commands it would be better for them.

7:36
Jonathan – we agree! Have to be little more specific.
7:36
Comment From Jerry Scott

Rachel, I’m 45 and still her my Mom’s voice in my head telling me to wipe my feet before I come in the door. You are right that is the voice that gets the best results . . .

7:36
Comment From Tim Chafos

and teacher notes/communications folder in this app

7:37
Comment From Rachel A.

LOVING the calendar idea!

7:37
Comment From Craig

It would be useful if you had activities that you wanted to achieve that the child or the parent choose from for an activity.

7:37
Comment From Jonathan Ezor

We should also keep in mind which devices are likely to pass district muster. Our district was still recommending Alphasmart Danas a few years ago (and for all I know still is).

7:37
Comment From Guest

My son is 19, but he is constantly asking what happens today, tomorrow or next week over and over, Calender is good

7:37
Comment From maggie

i am wondering if anyone knows how to deal with a high functioning little girl who is so high function she can manipulate anyone into anything and is sooooo good at school but when she comes home she shuts down??? and our school district wont help with a OT. she has sensory issues and i have tried everything. compression, bands, etc.

7:38
Comment From Jeremy

A web platform that coud work on all devices would be AMAZING

7:38
Comment From charlene

I have my daughter who is non verbal and has autism and i think this device would work wonders in her class to help her communicate and to learn the days of the week and months and time, and school has nothing to help with it..

7:39
Comment From Jerry Scott

Jeremy, I agree that would be nice – enter items from my computer and have the result on her phone.

7:41
Comment From Charity

This would be a wonderful idea and the calendar/reminder function would be really wonderful for both of our children at home and at school.

7:41
Ok, let’s transition to some open discussion and questions… submit any questions or comments you have now!
7:42
Comment From Rachel A.

How much would this cost us :)

7:42
Rachel -the idea is to develop some apps that are free via Hackathon.
7:44
Comment From Jerry Scott

We touched on the different needs across the spectrum. I’d like to see some discussion on how we can identify those differences and help people know what apps would be appropriate for their kids.

7:45
great question! there are a ton of apps. Autism Speaks has a list but talk to your local service providers.
7:45
Comment From Craig

Could you elaborate how the hackathon would work?

7:46
Craig – in mid-October developers will literally get together with the top ideas and the Hackathon team to create apps!
7:46
Comment From Tim Chafos

Will the ideas suggested in this chat be posted/accessable somewhere after?

7:46
Tim – yep, all archived at www.autismspeaks.org/hackchat
7:46
Comment From Cindy

I am in LOVE with the idea to have apps. Can we make sure to somehow categorize them based on levels of understanding and interaction?

7:47
Comment From Craig

How well is the developer recruitment coming along?

7:47
Craig – incredible actually!
7:47
Comment From Lise

Are we talking about computer apps, phone apps or both?

7:48
we don’t know yet Lise!
7:48
Comment From Autism Help

Perhaps there could also be appt that is also connected to say a watch device. This will let you know his location at all times and can communicate back to you. Of course it’s by no means a substitute to parental supervision.

7:48
Autism Help – phone devices with GPS could manage this possibly
7:49
Comment From Karen

This will be live on the intenet right? So that I may hear the show? Thanks so much.

7:49
Karen – it’s a text chat only – no audio :)
7:49
Comment From Julie

this sounds like an incredible initiative – so worthwhile. I wish you all success

7:49
The entire team thanks you Juile!
7:50
Comment From Diane

Anyone know of an app that could plug into safari or IE that can be developed to read a word back? My daughter loves reading on her iPad and PC because she can adjust the font size (visually impaired too) but sometimes get frustrated when she doesn’t know a word. It would be great to just touch the word and have the device just say it back to her.

7:50
Diane – this exists – in Chrome for sure… trying to think of the name of the plug in…
7:51
Comment From Jonathan Ezor

Diane: Not sure about browsers, but most operating systems (Windows for sure) have accessibility features including readback.

7:51
Comment From Cory and Kristy

We have 6 kids and something like this would be a great help

7:53
Wow, that was terrific! We’re going to have to wrap the chat up now… THANK YOU for participating!
7:53
If you are in the NY/NJ/CT area on Sept 17 and 18, we’ll be at Maker Faire… stop by if you are planning to attend and watch the Autism Speaks Facebook/Twitter/web site for information and volunteer opportunities.
7:53
Phi will be talking about Hacking Autism on Saturday at 2:30!
7:54
That’s all for tonight – thanks everyone!
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