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The Month in Review: Autism Speaks January 2011 Impact

February 7, 2012 Leave a comment

January got everyone off and running quickly as we ramped up several new programs and initiatives for 2012 and literally hit the ground running.

In late January, the New York Times broke a story about the proposed DSM-5 change that triggered an avalanche of discussion, concern and more. To get the latest, catch up on Autism Speaks DSM-5 policy statement and FAQ.

Enjoy this month’s impact highlights!

Science

DSM-5

Autism Speaks issues DSM-5 Policy Statement

 

  • Top Ten January proved to be another lively month, beginning with continued media coverage of our Top Ten Autism Research Achievements of 2011 and the publication of Geri’s annual letter from the CSO. The month culminated with considerable media coverage and community concern about proposed revisions to the medical definition of autism spectrum disorder in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Understandably, our families are concerned about the potential implications for diagnosis and access to services, and our science leadership has been providing perspective through national media as well as our own blog and a heavily attended webchat. We will be working hard to ensure that the DSM changes do not exclude access to needed services.
  • Adults with Autism  We hosted “Adults with Autism: Sharing Ideas, Filling the Gaps,” a research summit focused on adults development, services, and treatments.  Held in North Carolina, we brought together major donors, scientists, clinicians, and staff to discuss the research Autism Speaks is funding that is investigating what factors lead to the best outcomes in autism, lifetime trajectories, and new services and treatments.  Read all about this incredible and unique event on our science blog.
  • Ireland On Jan 12-13 We held an international conference “Autism Spectrum Disorders: From Clinical Practice to Educational Provisions” at the Irish Centre for Autism and Neurodevelopment Research at the National University of Ireland, Galway. More than 600 delegates from around the world attended. You can read more on the science blog.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

House in Hand Autism Speaks

Housing and Residential Support Tool Kit

 

  • Community Grants Our Family Services Community Grants recipients for 2011 were announced on January 24th. Over $1 million in awards were issued to 53 community services organizations in the United States and Canada. The focus of the Family Services Community Grants is to promote autism services that enhance the lives of those affected by autism while expanding the field of service providers. The next round of Family Services Community Grants will be announced in February.
  • Video Glossary On January 5th, we launched an updated version of the Autism Video Glossary – a section on autism treatments. Like the first phase, this was a collaborative effort between Autism Speaks, First Signs and Florida State University. The new treatment section expands the Video Glossary’s library with the inclusion of more than 100 video clips from actual therapy sessions illustrating 22 treatments that may be used to help children with autism build skills, connect with peers and family members, and reduce challenging behaviors. It offers families a window into the various treatment options, provides a description of each method, and lists the top five research studies supporting the treatment and where to find more information. Professionals will also find the treatment section useful when working with a family to determine the best course of treatment for a child with autism.
  • Housing We also launched our Housing and Residential Support Tool Kit in January. The tool kit includes a written guide, a catalogue of residential options and supports, featured house of the month, housing resources and housing in the news.   Our hope is that this tool kit will provide information to individuals with autism and their families as they thinking about housing and residential support options.

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

Military families sound off Autism Speaks

Military families sound off for autism

  • Military Families Sound Off Military families finally got their say before Congress about the shortcomings in their autism insurance benefits, including the loss of all autism benefits when they retire. Autism Speaks helped organize the event and rally military families to the Capitol Hill briefing which resulted in an overflow room. Rep. John Larson of Connecticut, who is sponsoring the Caring for Military Kids with Autism Act, called the plight of America’s military families raising kids with autism “immoral.”
  • And They’re Off!  Autism insurance reform campaigns in the states have launched with new bills introduced in Utah and Nebraska, a bill expanding existing benefits launched in Vermont and a bill protecting coverage for Applied Behavior Analysis already voted out of the Virginia Legislature and on the desk of Governor Robert McDonnell. Autism Speaks has spearheaded autism insurance reform campaigns nationally that have resulted in 29 states representing 70 percent of the U.S. population now protected by such laws.
  • ‘Show Me’ State Shows the Facts on Autism Insurance The Missouri Department of Insurance has released an analysis of its year-old autism insurance reform law showing that the impact on premiums was 0.1 percent, a fraction of the 3 percent impact used by insurance industry lobbyists in their efforts to defeat such laws. The Missouri analysis was consistent with findings Autism Speaks has gathered from five other states showing that the implementation of autism insurance coverage has minimal impact on premiums.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Colgate University’s Women’s Hockey

Colgate University’s Women’s Hockey supports autism research

  • Gooooooaaaaal! In collaboration with Autism Speaks U, Colgate University’s Women’s Hockey team is hosting their 2nd annual Autism Awareness Project on February 3, 1011. This project is in support of their team manager, Kati Williams, who is a local teenager on the autism spectrum. Through their various fundraising and awareness efforts they hope to have over 1,200 fans attend the game to help shine a bright light on autism.
  • T-shirt Madness Autism Speaks was introduced with a unique and innovative fundraising opportunity with the company Sevenly. Sevenly designed a custom t-shirt for Autism Speaks and used social media to spread awareness and raise funds! Learn more here and be sad that you missed your chance to get a shirt!

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

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!

The Month in Review: Autism Speaks October 2011 Impact

November 3, 2011 5 comments

Last month we tried an experiment… we attempted to recap the most important, relevant things going on around Autism Speaks to give you some insight into the breadth and depth of our organization; and to solicit your feedback. Thank you for your incredible responses and questions!

One of the more common questions we get (similar to the one that Kristine on Facebook posted) is, “What can Autism Speaks do to help my family today?” It’s a great question!  We understand that families are struggling and are looking for help and information. Using an “evidence-based science” approach, we seek to deliver useful information, tools, and resources for families that they can immediately use, such as the 100 day and transition kits. Programs such as Advancing Futures for Adults with Autism provide resources across the lifespan. Not only do we provide a wide collection of tools, we also staff the Autism Response Team which is available to answer your questions via email, phone and online chat! They can be reached via email at familyservices@autismspeaks.org or 1-888-AUTISM2. Kristine, that’s how we help families today, while we continue to increase awareness about autism, advocate for more funding for research and services, and fund innovative research projects that are developing improved treatments and services for people with autism.

If you know of other things that might be helpful to another family, please SHARE them by leaving a comment! We want to know what you think is important.

Science

Illustration by Gracia Lam

Illustration by Gracia Lam

  • We’ve got an MD on staff!  This month, we hired Joe Horrigan, MD to head up Autism Speaks’ medical research.  His charge is to spearhead the development of new medicines and other treatments that can help people with autism communicate and learn better and address some of the medical conditions associated with autism, such as GI and sleep problems.  Welcome, Dr. Horrigan!  Look for him on our Science blog.
  • Leading the Way Autism Speaks is leading the way in developing an enhanced Autism Tissue Bank that will accelerate the discovery of the causes and new treatments for autism.   Autism Speaks Autism Tissue Program (ATP) featured prominently in a feature story in the prestigious science journal, Nature, on the tissue bank shortage and how a small handful of organizations such as Autism Speaks are working to fill the void and speed research that can help individuals and families struggling with neurodevelopmental disorders such as autism.
  • World’s Largest Genome Library will be created by Autism Speaks and the Beijing Genome Institute.  Autism Speaks and  announced an agreement to create the world’s largest library of sequenced genomes from persons with autism spectrum disorders (ASDs). Multiple stories have appeared in the U.S. and China. The journal Nature interviewed Andy Shih on the agreement, as did Genome Web Clinical Sequencing.
  • Got Hours? Geri Dawson held her first “Office Hours with the Chief Science Officer” which featured guest host and renowned geneticist Steve Scherer, PhD, who addressed the question: What do the new findings in genetics mean for my family?  Dr. Dawson will be holding monthly office hours and the next one will be on the topic of new approaches to early intervention, scheduled for the first week of December Read the transcript.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

  • Employment October is National Disability Employment Awareness Month. We highlighted the Jay Nolan Community Services Employment Tool Kit that was funded by one of our Family Services Community Grants. Other employment-related activities included question of the week on Facebook and live chats with:
  • New Toolkit Alert New Tool Kit Alert – in an effort to provide information and encouragement to all people with individuals with autism in their lives, Autism Speaks has several new Family Support Tool Kits. The purpose of each kit is to help teach family members and friends more about autism and provide resources and supports to each group. New kits include:
    • Parents
    • Siblings
    • Grandparents
    • Friends

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

Signing in NY

Signing in NY

  • New York Autism Speaks Co-founders Suzanne and Bob Wright stood alongside Gov. Andrew Cuomo as he signed legislation making New York the 29th state to enact an autism insurance reform law.  The New York law is one of the strongest in the nation, setting no caps on age or visits for behavioral treatments. Governor Cuomo credited Autism Speaks for its leadership role in winning enactment of the legislation.
  • California We (all of us) did it! A major campaign was launched to ask Governor Brown to sign SB.946, the autism insurance reform bill, into law. Because of California’s significance as the most populous state, we asked advocates in the other 49 states to participate by recruiting their friends and family in California to participate. Thousands of emails were sent into Governor Brown and over 1,000 people left comments on his Facebook page as well. Every possible method to get through to him was deployed, including a successful political cartoon campaign. The cartoon was printed as 750 posters and distributed at the Oct. 9 Sacramento Walk, the day the bill was signed by Governor Brown making California the 28th state to enact reform.
  • Michigan Our attention has now turned to Michigan where we are urging the state’s legislative leadership to move a pair of autism insurance reform bills before the year’s end. We need your help! If you are in Michigan, or know someone who is please text “AVotes” to 30644 and we’ll alert you when we need your help!
  • Autism Law Summit The 6th Annual Autism Law Summit attracted 100 activists from 33 states to Salt Lake City. The event highlights efforts to obtain insurance benefits for necessary autism treatments through legislation, litigation, and encouraging employers with self-funded plans to include the benefit for their employees. During the summit, we celebrated Arkansas, California, Rhode Island, Virginia and West Virginia for enacting reform bills during 2011.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

60 Minutes Apps for Autism

60 Minutes Apps for Autism: image from CBS

  • Apps for Autism The producers of 60 Minutes consulted extensively with Chief Science Officer Geri Dawson and VP of Scientific Affairs Andy Shih in preparing a special segment on autism applications for communication, which aired Sunday, October 23rd. The full show can be found on the CBS News website.
  • Parents Magazine The October 2011 issue of Parent Magazine featured an interview with Autism Speaks Chief Science Officer Geri Dawson in an article entitled “Understanding Autism.” The piece encouraged parents to pursue an early diagnosis of autism in their children and highlighted the beneficial outcomes that early intervention and treatment can bring to a child diagnosed with autism.  To read an excerpt from the article, click here: http://www.parents.com/toddlers-preschoolers/health/autism/autism-diagnosis/
  • Extreme Makeover: Home Edition On Friday, October 28, ABC “Extreme Makeover: Home Edition” aired an episode featuring the McPhails, an Oregon family with two sons affected by autism. In addition to tackling home improvements, the EMHE team worked with Autism Speaks to rally the local community to raise autism awareness in honor of the family. To watch the episode click here: http://abc.go.com/watch/extreme-makeover-home-edition/SH559052/VD55150625/mcphail-family-part-2

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

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…

Steve Jobs: 1955 – 2011

October 6, 2011 12 comments

With the sad passing of Steve Jobs yesterday, Autism Speaks wanted to take a moment to recognize the enormous contributions he and Apple made to the autism community. Jobs brought touch screen computing to the masses, and as a result of the iPad and the many other tablet and touch screen devices that followed, he helped many affected by autism achieve a degree of independence that would simply have been impossible without that technology. He was a one of a kind entrepreneur, inventor and innovator, and we felt it was appropriate that we take a moment to recognize his extraordinary life, and to thank him for the contributions to the autism community. RIP Steve, and thanks.

If you would like to share your thoughts, memories, and condolences, you can email rememberingsteve@apple.com

Here are two blog posts from the autism community that celebrate Steve Jobs:

Diary of a Mom remembers Steve Jobs through the eyes of an autism mom, in this post.

Squidalicious thanks Steve Jobs on behalf of her son Leo and the rest of her family here. Leo was featured in Apple’s iPad: Year One.

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