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Archive for October, 2011

Autism in the News – 10.25.11

October 25, 2011 1 comment

UPDATE: Estimated 2,000 answer call to help search for missing autistic boy (Richmond Times-Dispatch)
At 10:30 a.m., three school buses filled with volunteers left to conduct a search that would start on Verdon Road. Read more.

Rise of autism puts strain on public school budgets (Australia)
The number of children in NSW public schools with autism is nearly four times higher than it was just eight years ago, placing a significant strain on the Education Department budget. Read more.

Study reveals differences in brains of autistic children (WCNC.com)
Researchers in California are doing work that could offer new insight into autism. Read more.

Families with autistic children face long wait time for state services (Indianapolis, Ind.)
Indiana families of children with autism are facing years-long wait for access to state services, a wide geographic disparity in care, and shrinking resources for those children when they become adults. Read more.

Comedian Jay Leno Helps Accident Victim in Motorcycle Charity Ride (Glendale, Calif.)
Late-night talk show host Jay Leno sure puts the grand in grand marshal. The Tonight Show host, who was grand marshal Sunday of Love Ride, one of Southern California’s biggest motorcycle shows, helped a motorcyclist after he had gotten into an accident during the ride. Read more.

 

Categories: Autism in the News Tags: ,

I’m not running to win, I’m running to honor

October 25, 2011 10 comments

Team Up! with Autism Speaks is dedicated to raising funds to support the mission of Autism Speaks through endurance events that we partner with.  Our goal with each race is to raise awareness and funds through races. We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Please join our team and help us accomplish our mission!

Billy Mann, father, husband, Autism Speaks Board Member, believer…I am 42 years old, not graceful and not pretty, I’m training hard and a week away from the New York Marathon.  Between online donations, mail-ins and my awesome friends, P!nk and Carey Hart for contributing $25,000 towards the $110,000, we are only about $33,000 away from reaching our goal of honoring the ONE in 110 children. 

TEN REASONS why I’m running the marathon for Autism Speaks

  • I’m running to honor the incredible autism moms out there like my wife for whom every day is a marathon that tests their limits and then some.
  • I’m running to acknowledge children at all ages who, like ours, spend months/years learning how to simply hold a fork, or speak a word or learn to put on their clothes by themselves.  The 5 hours or so it is likely going to take me to complete the 26.2 miles is nothing next to the 40 hours of therapy my son needs every week just to fight for bare basic skills. If these kids can do that, I can push myself to the limits to do this.
  • I’m running for the parents but also to acknowledge the siblings and grandparents—in or out of any organization–that came before my wife and I, to thank them for being on the front line of advocacy before there was an Autism Speaks, before there were any services and they were brave enough to find a way forward.
  • I’m running for parents whose children with autism are now becoming adults with autism. Between now (when my oldest son is 9 years old) and when my family faces this transition, today’s parents who are addressing this will have done so much to benefit families like mine and I want to honor them now, and always.
  • I’m running to honor the high-functioning autism community and say thank you for educating us and ensuring that the world remembers that every individual with autism—however they are uniquely affected– has a voice, an intellect, gifts and talents, a point of view as valuable as any citizen and each individual contribution to our world should be respected, protected, embraced and celebrated.  I am running to say thank you to them, too.
  • I’m running because the human body is not meant to run 26.2 miles but autism makes us go beyond our limits.  I’m running because it’s hard, because it takes me out of my comfort zone, because I feel awkward doing it, because it hurts, because it takes leisure time and sleep from me: all things that our families face every day and it is a small gesture by comparison.
  • I’m running to acknowledge parents and families many of you know but do not realize that right now, silently, they are at the end of their rope and feel that they can’t go on another day struggling with autism’s impact on their lives because they are just strapped emotionally, financially, physically and even spiritually.  These are the parents who will keep my legs moving when I feel I cannot go on any more because they find a way.
  • In the past 7 years since we received our son’s diagnosed, autism prevalence soared from 1 in 166, to 1 in 150, to 1 in 110 (and 1 in 70 boys) in the USA.  It is 1 in 56 in the UK.  It is 1 in 38 in S. Korea.  Every time I share the statistics with people they always ask the same question, “Why?” and all I can say is the truth: we still don’t really know. With the numbers rising much faster than anyone could have imagined, we are lost without raising money. I am running so that when I ask you to give, you know I’m in it with you every step of the way.
  • I’m running to honor Autism Speaks, every local chapter, every advocate, every parent or sibling who wears a pin or has a puzzle piece on their car or baseball hat.  I am running to say thank you for being a safe resource for families like mine.
  • Lastly, I am running for Christian Hildebrand, an extraordinary little guy who God placed in the right hands with the entire Wright family and in so doing inspired real change in the world for all of us affected by autism.

I don’t know if we can reach the $110,000 for the 1 in 110 kids, but the marathon isn’t for another two weeks.  I’m not running to win, I’m running to honor.

Autism Speaks ATN Registry Enrolls 4,000th Family

October 25, 2011 16 comments


 Posted by Clara Lajonchere, PhD, vice president of clinical programs, Autism Speaks

 

Four years ago, the Autism Speaks Autism Treatment Network (ATN) set out to collect information on the medical concerns of children and adolescents with autism across North America—while delivering the best in evidence-based, comprehensive healthcare and support for these patients and their families.

Through the efforts of hundreds of clinicians across what are now 17 sites, the ATN Registry has now surpassed 4,000 enrolled children. The information gathered from these participating families is providing the global healthcare community with priceless information on the medical conditions often associated with autism spectrum disorders (ASDs) and the best ways to manage them. In particular, such large numbers allow researchers and physicians to better understand and address the great diversity of medical, behavioral, and other quality of life issues associated with autism.

Enrolling our 4,000th family is an important milestone for Autism Speaks, as we continue to expand and support the ATN and its mission of providing the highest quality of comprehensive care by teams of medical professionals who understand ASDs and excel at conducting evidence-based research.

In 2008 and again this year, the ATN earned additional federal funding to operate as the Autism Intervention Research Network on Physical Health (AIR-P)—funding made possible thanks to the passage and recent renewal of the Combating Autism Act. Under the grant, awarded to the Massachusetts General Hospital for Children, the ATN/AIR-P Network continues to develop and conduct research aimed at directly improving the health and well being of children and adolescents with ASDs and other developmental disabilities. Funding is supporting research in areas of highest priority to families and that can have the greatest benefit for children.

As we celebrate the benchmark of the 4,000th enrolled child, we want to again express our deep gratitude for both the commitment of our participant families and the thousands of donors, volunteers, and staff members whose support make this work possible. Thank you for helping us improve the care and respect afforded to all individuals on the autism spectrum.

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.

U.N. Postage Stamp to Honor World Autism Awareness Day

October 24, 2011 14 comments

Hey everyone! We have a really exciting opportunity to celebrate World Autism Awareness Day, and we need your help!

The United Nations is looking to feature artwork, by an individual on the autism spectrum, for a special 2012 Autism Awareness stamp. All you need to do is upload your artwork to a special album on Facebook to be in the running! Remember, your art will be on a postage stamp, so the artwork has to look good on a small scale!

The deadline is November 4, 2011 – so get your submissions in! Use your imagination and be creative, the design is totally up to you!

You can upload your photos to our Facebook Wall!  Please be sure to copy and paste the link underneath!

Autism in the News – 10.24.11

October 24, 2011 1 comment

Apps for Autism (CBS News)
Autistic people whose condition prevents them from speaking are making breakthroughs with the help of tablet computers and special applications that allow them to communicate, some for the first time. Lesley Stahl reports. Read more.

Symptoms of Autism Can Be Delayed (French Tribune)
The word Autism often leaves our mind blank, as the name itself stands for mental blockage. Previously, it was known that the symptoms of autism could be diagnosed soon after birth. But recently, it has been informed that the symptoms of autism may be delayed and could be diagnosed late. Read more.

UPDATE: Hanover continues search for 9-year-old autistic boy (Hanover, Va.)
A 9-year-old autistic boy on a walk with family disappeared into North Anna Battlefield Park on Sunday afternoon while his father, brother and an adult woman stopped to take a break. The search continued throughout the night and into this morning without success. Read more.

Technology Helps Autistic Children with Social Skills (Psych Central)
A new research project suggests virtual worlds can help autistic children develop social skills beyond their anticipated levels. Read more.

Categories: Autism in the News Tags: ,

Autism Speaks U Spotlight: Virginia Tech Chapter President

October 24, 2011 2 comments

This guest post is by Kaitlyn Whiton, a senior at Virginia Tech. She is the president of her school’s Autism Speaks U chapter and is working to create a long lasting legacy on campus! Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

Autism was a word that most people had never heard of 20 years ago, when my younger brother, Freddy, was diagnosed. I cannot count how many times my friends would ask me why Freddy would hit himself, not talk to anyone, or only repeat the same lines from the same movies. By the age of 10, autism had already had a huge impact on my life and I knew I wanted to continue to help others, like my brother, grow to their fullest potential. Starting a chapter of Autism Speaks U at Virginia Tech was a perfect opportunity to not only give back, but also inspire others to be involved with a wonderful organization.

Kaitlyn (far right) with her brother Freddy (left) and her father Fred (center).

Even though this is only Autism Speaks U Virginia Tech’s second semester on Hokie stomping ground, we have already made an impact in our community. Last semester we raffled off a football signed by coach, Frank Beamer and a  basketball signed by coach, Seth Greenberg. This semester, our big fundraising event is going to be an awareness night at Hokie House, a local restaurant and bar, on Friday, November 4. During the event we are going to be raffling off themed baskets as an extra way to raise money.

Autism Speaks U Virginia Tech, unfortunately has a number of seniors who will be graduating in the spring. Luckily, we have found motivating and inspiring individuals who will continue the mission of Autism Speaks U in the Virginia Tech community. Our old executive board will help train the new executive board throughout the rest of the current semester and will be here to advise the new officers during the spring semester.

My dream would be to come back to Virginia Tech and attend a fundraiser executed by our predecessors. My goal this year is to inspire, motivate and educate the newest members of the executive board so that our organization continues for many years to come.

Members of Autism Speaks U Virginia Tech at their 2011 club fair.

For more information about Autism Speaks U at Virginia Tech, contact the chapter president, Kaitlyn Whiton, at kait6573@vt.edu.

Tune-In: 60 Minutes Story on Tablet Computers and Apps for Autism

October 21, 2011 6 comments

Tune in to CBS “60 Minutes” this Sunday, October 23, at 7:00 p.m., ET, for a report on the growing use of tablet computers as teaching and communication tools for children with autism. The segment profiles two non-verbal students who have made significant strides communicating with touch-screen tablets, and features an interview with a University of Pittsburgh neuroscientist who is researching why more than 30 percent of individuals on the spectrum cannot speak. Over the past six months, Autism Speaks Chief Science Officer Geri Dawson and Vice President of Scientific Affairs Andy Shih both provided “60 Minutes” with extensive background information for this story.

Watch an excerpt from the story below:

Categories: Awareness, Science

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…

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