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Tune-in to NBC’s Nightly News This Evening

October 3, 2011 5 comments

Tune-in to NBC’s Nightly News with Brian Williams at 6:30 p.m. EST today, Monday, October 3. Their popular “Making a Difference” segment will be on the autism-friendly performance of Disney’s The Lion King, which was held on Sunday, October 2. Autism Speaks will be featured in the NBC piece. The Theatre Development Fund (TDF), a not-for-profit performing arts service organization whose mission includes making theatre accessible for all audiences, piloted the “Autism Theatre Initiative,” to make theatre accessible to children and adults affected by autism, and their families. This was the first ever autism-friendly performance in Broadway history and our own Lisa Goring, vice president of Family Services, provided input and recommendations to TDF and Disney on what alterations could be made to the show to ensure an autism-friendly production for individuals with autism.

Autism TV… Sort of.

May 24, 2011 8 comments

I recently left my longtime career as a local TV news anchor in Baltimore.  I was there for 21 years and during that time my daughter was diagnosed with an Autism Spectrum Disorder (PDD-NOS).  So,  I thought…hey, wouldn’t it be a natural fit if I could take what I know about telling stories and create a   television show with kids who are all over the “spectrum.”  Programming  that shows children and families, from all walks of life, dealing with the challenges and uniqueness of autism.  And maybe we could give them some help or ideas along the way. And maybe we could educate a mass audience about what makes autism special and why we all should care about these individuals who are all around us.

Well, the big cable channels weren’t biting.  The production companies I contacted weren’t going for it either. I mean, in theory, they liked the idea, but in reality they just couldn’t see it being very appealing for the long haul. Of course, I find the subject incredibly appealing and compelling!

Eventually I thought why not do it myself?  With the help of a very talented videographer, a guy who knows his way around the web, and many supportive friends…we created Real Look Autism. My version of Autism TV.

Real Look Autism is a video resource for anyone touched by autism.  We tell focused and beautifully shot and edited stories about therapies and strategies that are working for children on the spectrum. We look for even the smallest measure of success. Our slogan goes like this: “You tell us something that’s working for you…and we’ll show everyone else”.  So, because we look for what is “working”, our short videos have an element of optimism. And how can you not LOVE these kids, their parents, and the teachers and therapists who are so committed.  We keep it real and we aim to spread some hope and understanding.

Real Look Autism.com, thanks for visiting and watching! We hope you LIKE US on Facebook, spread the word and sign up to find out when we premiere another new video.

And besides… we don’t even run commercials… at least not yet!

-Mary Beth Marsden, Founder of Real Look Autism

TV AD Blitz Calling on Governor Brewer to Veto Misguided Arizona Legislation to Repeal Autism Insurance Law

April 19, 2011 9 comments

Autism Speaks has announced a major, intensive two-day TV ad campaign, running April 19-20, that will call on Governor Jan Brewer to veto a misguided bill that would repeal enacted autism insurance reform legislation and force hundreds of Arizona families to once again pay tens of thousands of dollars a year out-of-pocket for critical autism diagnoses and treatments –– even though they already have health insurance coverage.

“Neighbors,” will run nearly 200 times over two days on Phoenix’s network TV affiliate stations – KNXV-TV (ABC), KPHO-TV (CBS), KSAZ-TV (FOX) and KPNX-TV (NBC). The ads juxtapose two families who have a child with autism – one of whom is getting the treatments he needs because his parents’ insurance company covers his therapies, and another who isn’t because his insurer is not required to provide coverage. The ad calls on viewers to call Governor Brewer and urge her to veto the bill.

For more information, please visit Autism Votes

The Story Behind Autistic-Like

March 30, 2011 2 comments

This is a guest post by Erik Linthorst is a 13-year veteran of the film business. An award winning documen­tary filmmaker and a produced screenwriter.  Erik founded Pergé Produc­tions in 2006 to make films aimed at helping families with children with special needs.  In his advocacy work, Erik travels worldwide, present­ing his film and advancing the issues it raises.

Throughout April, PBS stations around the country will air a documentary film Erik Linthorst made about searching for the right help for his son, Graham, who doctors called “autistic-like”   Check your local listings for airtimes, or www.autisticlike.com.

Autistic-Like:Graham’s Story started as a project for me, but I now realize it has become something more like a community. Many people have told us our story sounds so familiar, and that’s really why I made the movie: I felt like it shouldn’t be so hard to find the right help for our children.

Our story began in 2005, a very hard year for our family.  Our seventeen-month old son’s quirks were blooming into full-fledged obsessions.  We had experts on one side saying he was clearly and possibly severely autistic.  We had experts on the other side saying he was most likely not autistic. Still others insisted he was too young to diagnose.  We had family and friends on both sides giving us advice that was by turns helpful, misguided and sometimes downright bad.  My wife and I were in an emotional tailspin, alternately propping each other up and freaking each other out with our anxious thoughts.

Then we began the slow process of digging out:  discarding this expert for that one, this treatment for that, this book for that, this piece of advice for another.  And we grew in strength.  Once I was back on my feet, and feeling armed with new understanding, I felt the desire to reach out to families just beginning their hard year.  I felt like sharing our story might help them dig-out faster.  So, being in the film business, I decided to make a documentary about our journey.  I brought out my camera, began to chronicle our lives, and recruited journalist Jody Becker to help investigate the issues, elevating an intimate family story into what we aimed to make a thoughtful report from the edge of the autism epidemic.

Then I sent the film, Autistic-Like: Graham’s Story, out into the world and planned to be done.  But then the emails started coming in.  And they kept coming.  Then the trickle became a wash, several a day, coming in from all over the U.S., and then Canada, and then from all over the world.  And they all had questions.  What did I think about this therapy? that biomedical approach? This doctor? That organization?  I took the time to respond to all of them, because the truth is it helped me feel no so alone, too.

I heard from professionals, as well.  Many told me they use the film as a new parent orientation tool. They shared that they were teaching workshops, and seminars with it.  Schools were holding movie night fundraisers.  But they had questions too:  How could they see the extended interviews from the film?  Did I have an update on Graham’s progress?  workshops?

After much consideration, both for Graham’s sake as well as my wife and my own, I decided to say ‘yes’ to all of the above.

So this month our little movie hits a milestone: the PBS broadcasts include an 8-minute update “Where is Graham Now”; we have translated the film into Spanish to reach more families, and now more insights from the experts are available in a  2 DVD Box set that includes a full-color 12 page guidebook for facilitating professional and community conversations. I’ve traveled with the film, met hundreds of parents and professionals, and like the slowly dawning realization that supporting Graham is a project with no end for me, I see the film that way, too. More families, more conversation, more resources. The story continues.

John Robison to Appear on ‘Ingenius Minds’

February 18, 2011 8 comments

Tune in on Thursday, February 24 at 10 p.m. EST to see John Elder Robison appear on Ingenious Minds.

Ingenious Minds enters the lives of savants: individuals who possess an extraordinary ability in areas such as art, music and mathematics, while also suffering from intellectual and developmental disabilities.

John Robison never had a high school degree, but he worked as a highly skilled mechanical engineer designing sound equipment, special effects, cutting-edge toys, nuclear test apparatus, and medical lasers.

John is a savant with Asperger’s Syndrome, which has given him a preternatural understanding of mechanics, but has made his social and work life exceptionally challenging. For more information about this episode, visit here.

 

 

Decoding Autism

September 23, 2010 17 comments

This is a guest post by Sara Lee Kessler, the reporter, producer, and writer of “Decoding Autism” on NJN Public Television. “Decoding Autism” will premier on Monday, September 27 at 9pm EDT on NJN1. Viewers can also watch online here.

I have been NJ Public Television’s Health & Medical Correspondent for nearly 15 years, and have done stories on every medical condition imaginable. Autism is the most heartbreaking topic.  It’s heartbreaking both because it wreaks havoc with parents’ emotions and dreams for their children and because it frustrates the child who can not express his needs. Autism spectrum disorder is a devastating diagnosis, especially because there is no known cause and no cure.

When I first started reporting on autism, in 1997, it was rare.  Few people had heard of it.  Today, it’s unusual to meet someone who doesn’t know a family that’s impacted by autism.  Some people are calling it an epidemic because the numbers keep going up. One in 110 children is now being diagnosed with an autism spectrum disorder. Here in New Jersey, the rates are one in 94, which has the highest prevalence rate in the nation. While there’s disagreement on whether the ever-rising autism prevalence rate constitutes an epidemic, I think we can all agree that, at the very least, it’s a major public health crisis!

That’s the reason, even after doing at least 30 “Healthwatch” reports on autism, that I decided to delve deeper into the topic and produce a documentary. Over the last eighteen-months, I have interviewed autism experts, educators and dozens of parents, children, and scientists for this project. But, ultimately, I decided that “Decoding Autism,” should focus on  what doctors know, what scientists are finding out, and how the flurry of autism research across the nation is starting to shed light on this mysterious disorder.

What I’d like to share with you, and what’s most encouraging to me, is that some of the best minds in the nation are working on autism.  They are researchers who are looking for and who have discovered gene variants involved in autism.  They are psychologists or neuroscientists who are conducting infant-sibling studies on “at risk” children, meaning infants who have an older brother or sister on the autism spectrum.  It was amazing to learn that infants who go on to develop autism spectrum disorders tend to look at a mother’s mouth, rather than her eyes, missing important social cues.  So, that’s why so many children with autism tend to be mind-blind!  Everyone I interviewed shed so much light on the subject of autism.

I was particularly fascinated by what researchers told me about the brains of children with autism.  I learned that, at core, autism is a brain connectivity disorder that causes signaling delays. No wonder children with ASD have trouble communicating!  One expert told me that the brain of a child with autism has a tangled web of abnormal neural connections that fail to prune at critical stages and that the brain of such a child tends to be larger.

I also learned that we should be talking about the “autisms,” with an “s,” rather than autism, because, just like cancer, there are many different types of autism. Scientists say it’s critical that they find biomarkers, so they can develop treatment targets. As you’ll surmise when you watch “Decoding Autism,” I’m optimistic that today’s research will lead to tomorrow’s prevention strategies, earlier intervention, better therapies and, even cures.  That’s critical because parents of children with autism deserve answers.

Autism Talk TV and Autism Speaks

August 13, 2010 6 comments

This is a guest post by Marc Sirkin, Autism Speaks Chief Community Officer. Marc manages Autism Speaks social media, marketing, websites and online fundraising.

Since joining Autism Speaks it’s been one of my missions to start to bring the community together through the use of social media. We’ve invested in our Facebook and Twitter presence, our Ning community, our e-mail newsletters and two rapidly expanding and successful blogs – one for Autism Speaks and one for Walk Now for Autism Speaks. I am seeing some terrific conversations developing and platforms that enable the community to come together in a global conversation about autism.

At Autism Speaks, a big piece of our mission is to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. Through social media, I am hoping to help move this along. You can read our entire mission here: http://www.autismspeaks.org/mission.php

A few months ago, John Robison and I started talking about how we can continue to drive a dialogue and to bring the different and disparate pieces of the autism community together. Right before the IMFAR conference, John called me to tell me about a young man named Alex Plank, who is the founder of Wrongplanet.net. John had spent some time with him and thought that Alex, despite his public criticisms of Autism Speaks, would be a terrific person to involve in this ever expanding conversation. After attending the GRASP benefit event and meeting Alex, I invited him and John to a meeting to discuss some ideas on how we might work together. I eventually spent an entire day with Alex, hashing through a bunch of very cool, social media ideas, including one terrific nugget that has now become “Autism Talk TV.”

The idea is simple really, Alex was already producing a show that would feature a variety of perspectives from the autism community and we wanted to help. Not only did we want to give Alex a chance at creating a successful web show, we thought he was terrific on camera and with a promotional boost, more people might enjoy tuning into his show. Alex’s lively and engaging style as a host felt right to us and we committed to doing some test shows and to act as a show sponsor to help promote the show.  As a sponsor, we have no creative or content control; we do not drive Alex’s content agenda, but will provide assistance where we can for access to guests and additional information as well as show promotion where we can.

Our expectations are simple: we hope Alex will produce great content in an enjoyable, web-based format and that he will build “Autism Talk TV” into a widely viewed, successful venture. At Autism Speaks, we continue to invest in the entire community and to continue to “listen” and engage the community from all corners. It is my hope that this show will drive forward the conversation and help the entire autism community come just a little closer to each other.

I think it’s already working… on our blog, Jessica wrote “Although it may be surprising to see WP partnering with Autism Speaks, if it’s for a project that’s creating greater understanding about ASD, it’s a good thing,” and Dadvocate wrote “I’m honestly delighted that Alex Plank’s WP is partnering with AS.” I know some may find this partnership confusing or concerning and I’d ask you to allow us to explore this new partnership and see how far we can take it together. Stay tuned for more Autism Talk TV!

Check out Alex’s work on Wrongplanet here.

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“The More You Know” Autism PSA Starring “Parenthood” Cast

May 20, 2010 5 comments

Many thanks to Peter Krause, Monica Potter, and Max Burkholder of NBC’s “Parenthood” who filmed this PSA to raise awareness about autism and Autism Speaks. This PSA, in the “The More You Know” series, aired after Tuesday night’s episode, Team Braverman, which featured members of the family participating in a Walk Now for Autism Speaks event.

Tune In – Team Braverman on NBC’s”Parenthood”

May 12, 2010 14 comments

Tune in to NBC’s “Parenthood” next Tuesday, May 18 at 10 p.m./9 Central. The all-new episode, Team Braverman, features members of the family participating in a Walk Now for Autism Speaks event.

Peter Bell,  Autism Speaks’ Executive Vice President, was on set in Los Angeles and penned a blog post about his experience. Earlier this season, we spoke with Jason Katims, the show’s writer and executive producer. He tells how having a 13-year-old son with Asperger Syndrome inspired one of the show’s main storylines.

Check your local listings for show information.

UPDATE: Watch the entire episode here on Hulu. Also, the episode is being re-broadcast on Saturday, May 22 at 8 p.m. EDT. Check your local listings for show information.

Watch “The More You Know” PSA starring the cast of “Parenthood,” which aired after the episode.

“Parenthood” Shoot – Team Braverman

April 18, 2010 11 comments

This guest post is by Peter Bell, executive vice president for programs and services at Autism Speaks. Peter and his wife, Liz, reside in New Jersey with their three children. Their eldest son, Tyler, has autism.

On April 15, when most people were scrambling to file their tax returns, I had a once-in-a-lifetime opportunity that will hopefully make a profound difference for Autism Speaks and the autism community.

As many people know, the new NBC hit series “Parenthood” has a story line that involves a family coming to grips with their son’s recent diagnosis of Asperger Syndrome. For any family that has gone through the experience of having a child diagnosed with an autism spectrum disorder, you quickly realize just how easy it is to relate to the Braverman family. The show has beautifully captured the range of emotions our families go through during this difficult time.

So, when the producers of “Parenthood” approached Autism Speaks recently and asked if we would be interested in helping to film a future episode that would include an Autism Speaks Walk, the answer was without reservation “yes, of course!” To add icing on the cake, they also invited us to provide a real person to play the role of the Autism Speaks representative on the stage of the walk – that’s when this became a personal journey for me.

With just a few days notice, I was off to Los Angeles. Lucky for me, my body was still on East Coast time for the 7 a.m. call time. After signing all the necessary paperwork (I think I’m now a member of SAG), I was taken to the make-up trailer. There were about five chairs with make-up artists doing their magic on various actors. My second stroke of luck came when they seated me next to Monica Potter who plays Kristina Braverman, mother of Max.

I was told by some other “autism moms” at Autism Speaks to tell Monica how much they love her performance as the take-no-prisoners mom of Max. I faithfully shared this sentiment as they were removing the curlers from her hair and another make-up person was dabbing my face with something that felt cakey. It was sort of a surreal moment for me but I think she realized that this was the highest form of a compliment one can get, besides an Emmy, of course.

After a quick change into my wardrobe (special walk t-shirt, khaki pants and my own running shoes), it was time to report to the set. The walk venue was set in a community park not far from Century City. Since the series takes place in Berkeley, California, they had to be careful not to have any palm trees in the background. They transported us from the trailers to the set in a van and this is where I met Max Burkholder, the incredible child actor who plays Max Braverman, the young boy with Asperger’s. Naturally he was with his real mom and we enjoyed a nice conversation about his role and how he gets into character. Although his character is only eight years old on the show, he is actually 12 years old.

Once we arrived on the set, I had a chance to meet Peter Krause who plays Adam Braverman, Max’s dad. Fortunately, we connected on many levels. In addition to sharing our common name, we are both dads. Although Peter K does not have a child with autism, it was obvious that he takes great pride in having an eight-year-old son. We talked a lot about autism, what is known scientifically (and not), what’s behind the large increase, how families cope, etc. He was genuinely interested in learning everything he could about the condition and what families go through. I complimented him on his ability to capture the feelings that many dads go through when their sons are first diagnosed. Peter K was remarkably kind and fun to be with for the rest of the day.

Next – rehearsal. Since they were recreating a walk, which often attracts thousands of participants, they brought in more than 200 extras to create the feeling of a Walk Now for Autism Speaks event. I was really impressed that they were able to replicate the look and feel of our walks – then again this is Hollywood. After a few run-throughs it was time to “roll film.” Our scene was only about a minute long but we ended up doing it about 15-20 times. They needed to film it from several angles. Each time was a little different which allowed for some creative interpretations in how we delivered our lines. Which take they will use in the final cut is anybody’s guess but the amiable director, Lawrence Trilling, seemed pleased.

Perhaps the most memorable aspect of this experience was how wonderfully kind the cast and crew were. Each person was truly amazing. They were upbeat, deeply interested in autism, compassionate and energetic. Executive Producer/Writer Jason Katims,  who has a teenage son with Asperger Syndrome, was on set for much of the day and really is the creative juice behind the Braverman family’s autism story line. He confers with autism experts who are always on hand to make sure everything is as authentic as possible.

The episode is expected to air in mid-May and is the 12th of 13 episodes this season. The show has not been renewed for the fall yet, so please be sure to watch and tell all your friends and family to tune in. Autism Speaks will provide more information as the air date nears.

As for this dad, I’m back on the East Coast living my own wonderful version of “Parenthood.” I’m thankful that the world is learning more and more about autism spectrum disorders and the joys and challenges it can bring to an entire family via this groundbreaking series.

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