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When you hold your child in your arms for the first time, you stare into their eyes and swear to them that you will always protect them and never let anything bad happen to them. Unfortunately, you don’t always have control over life’s events and some of those events can be life altering.  This is what happened in the life of the Suskind family, who had an active child that was meeting developmental benchmarks, until one day, it all changed. But why? What was the cause? What had they done? And what could they do? This was the story that was shared with us at The Disney Effect: Communication with Autistic Children Through Animation discussion hosted by the Walt Disney Family Museum.

Jeff Kurtti, famed author and public speaker, was the moderator for this event and introduced the three panelists.  The first panelist was Dr. Bryna Siegel, who is a leading expert in the diagnosis and treatment of autism spectrum disorders at UCSF. Next was Ron Suskind, a Pulitzer Prize winner, best selling author, and father of autistic son, Owen, the main subject of his book, ‘Life, Animated’. Lastly, Jeff introduced Jonathan Freeman, voice actor for Jafar in Disney’s Aladdin, as well as a Broadway actor with credits that include Cogsworth in Beauty and the Beast, Admiral Boom in Mary Poppins, Grimsby in The Little Mermaid, and now, playing his original Disney character, Jafar in the new Broadway hit Aladdin.

Jeff started the discussion by introducing Dr. Siegel who shared some basic information about autistic children, such as:
-They are self directed.
-Many have photographic memories.
-The activities they engage in are meant to please themselves and not others.
-They prefer visual activities over auditory activities.
-Repetitive behaviors.
-Affected social communication.

Dr. Siegel then shared some artwork from autistic children, pointing out the egalitarian way the autistic children drew; meaning all parts of the picture had equal weight. One example had a panda bear in the forefront but this bear wasn’t the main focal point as the background was equally as vibrant and detailed.  Children with autism use their photographic memories to draw an image with precise detail. Dr. Siegel shared art from an autistic child who had a love of classic Disney characters, including Oswald the Lucky Rabbit, Pedro the Plane from Saludos Amigos, Bambi, Dopey, and other Disney classics.  Because these characters are solidified in the mind of this child, he is able to draw each of them with great detail and it will look the same every time.

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The next speaker Jeff Kurtti introduced was Ron Suskind. He asked Ron to share his story, and to start, Ron showed us 4 1/2 minutes of a documentary that is being made about the Suskind family called, “Animating Owen”, which can be found on www.lifeanimated.net. Owen lost all speech at age 3, but loved watching Disney movies.  When Owen was six, after years of not having a conversation with anyone, he gave his family a glimpse that he was “in there”.  On a whim, Ron went into Owen’s room and picked up a puppet of Iago, Jafar’s sidekick from Disney’s Aladdin, and snuck under the comforter of Owen’s bed. While peeking through the comforter, Ron put on his best Gilbert Gottfried voice and asked Owen how it felt to be him. Owen’s response was that he was lonely and didn’t have any friends —this was a breakthrough as it had been over 3 years since Ron had had a meaningful conversation with his son. Owen then jumped into being Jafar and wanted Iago (Ron) to relive the script with him, but Ron wasn’t able to keep up.

The Suskind’s decided to have “Basement Sessions”.  During these sessions, they would put on a classic Disney animated movie, learn the different character roles, and act them out as a family.  Ron remembered one night when they were watching ‘The Jungle Book’, Owen was Mowgli, Ron was Baloo, and Cornelia, Owen’s mother, was Bagheera.  At one point in the movie, and in their role play session, Mowgli hugs Baloo, calling him Papa Bear, and Ron didn’t know if that was a hug between Baloo and Mowgli or between father and son.  He quickly realized that he didn’t care, it was another breakthrough where he was finally able to be in a two way relationship with his son and he wouldn’t want it any other way.  Some doctors advised Ron and Cornelia to use Owen’s affinity for Disney movies as a behavioral tool and have Owen complete tasks in order to earn the chance to watch a movie.  Owen quickly caught on to what they were doing and told his parents that he didn’t want them around, so Ron and Cornelia knew that they would have to join Owen’s Disney affinity and they dove head first into the classics, now claiming to have a PhD in Disney.

Through Disney films, they realized that Owen could make connections to his daily life.  For example, they would use ‘101 Dalmatians’ to help Owen understand reasons behind walking the dog and Owen was able to relate and help with this task. Disney became a codebreaker for him.

In college, Owen started a Disney Club and instantly had a group of 13 kids, with different autism spectrum disorders, that were as interested in Disney as he was.  Ron and Cornelia joined the Disney Club one night for their meeting and they all watched ‘Dumbo’. One member of the club told Ron that when she was small, she couldn’t speak and that she felt like she was an outcast like ‘Dumbo’.  Another member told them that he closely related to ‘Pinnochio’ because he felt like a wooden boy and he wanted to feel like a real boy. He also said that he was born with “wooden” eyes and it was hard to see.  Ron realized that these were a special bunch of kids with such original thoughts because they weren’t trying to impress anyone with what they said, they were saying it because it was what they felt.

Owen is now 23.  He has graduated from college and is living with his girlfriend and 2 other roommates in a supported living community.  The Disney Club is still going strong with 30 members and 4 boy/girl couples.

To wrap up the discussion, Jonathan Freeman was introduced and we got to learn how the Suskind family has changed his life. One weekend, just before Owen’s birthday, the Suskind’s went to New York and saw Mary Poppins on Broadway.  Jonathan is one of Owen’s favorite actors from Aladdin and he was so excited to see him in his role as Admiral Boom.  The Suskind’s waited at the stage door after the show in hopes of meeting Jonathan, but Jonathan had exited out a different door.  Cornelia took the boys over to a restaurant while Ron stayed behind, asked for a piece of paper from the doorman, sat on the stoop, and started writing Jonathan a letter.  When he was finished, he gave it to the doorman and asked him to deliver it to Jonathan.

During this recap of the event, Jonathan and Ron both laughed at how Ron had to include that he was a Pulitzer Prize winner in the letter—Ron said he was shameless in his attempt to reach out to Jonathan.  After the recap, Jonathan pulled the letter from his coat and asked Ron to read it to the audience.  In the letter, Ron introduced himself and told him about Owen and asked if there would be any way that Jonathan could do him a favor and call Owen on his birthday.  After googling Ron to see who he was and to confirm he had won a Pulitzer, Jonathan called Ron to learn more about Owen’s story just moments before going on stage as Admiral Boom.  He admitted, in hindsight, that wasn’t the best idea because he ended that phone call in a heap of tears and had to pull himself together to get ready for the performance—but of course, he committed to calling Owen on his birthday.

On Owen’s birthday when the phone rang, Ron and Cornelia knew who it was and had Owen answer the phone.  After Jonathan introduced himself, Owen was speechless!  After composing himself, he jumped into Iago’s voice and started reciting lines from Aladdin in hopes that Jonathan could carry out the scenes as Jafar.  Unfortunately, it had been many years since Jonathan had played his role as Jafar and he couldn’t remember the lines.  He explained to Owen that he would practice and do it with him next time.

Jonathan’s life hasn’t been the same since receiving that note from the doorman.  He shared how when he was chosen as the voice of Jafar, someone told him, “This will change your life in more ways than you can imagine.” At the time, he didn’t really read much into it, he saw it at face value of how the new role would help him get his foot in the door of other roles. Many years later, while with a friend, Jonathan was introduced to the late Jerry Orbach on the streets of New York. It was brought up that they had something in common with both being Disney voice actors and Jerry said to Jonathan, “That will change your life in more ways than you can imagine.” It was a de ja vu moment for Jonathan, but after having met Owen and the Suskind family, that phrase has taken root and he understands it’s true meaning.

Jonathan has become good friends with Owen and the Suskind family and has even been a guest in their house.  The first time he visited the Suskinds in their household, he awoke to “A Whole New World” being blasted from a sound system next to his room. He jokingly asked if they did that on his accord since it was from Disney’s Aladdin, Owen said that he plays that song every morning to help him start off the day on the right foot.  In another conversation, Jonathan asked Owen what he thought ‘Aladdin’ was about, Owen said, “Accepting who you really are and being OK with that.”  That was the first time he got such a deep answer to that question and he knew Owen was someone special.  He has since visited the Disney Club on numerous occasions and can’t wait to visit again.

To close the presentation, Jonathan shared the great things that are happening with Disney Theatrical Group and the Theatre Development Fund’s Autism Theatre Initiative. These groups have joined forces to put on autism friendly performances by adjusting the sound and lighting to not be too overwhelming. There are also quiet areas in the lobby for children who need a place to calm down. But, most of all, it provides families with autistic children a safe environment for an opportunity that most families take for granted.  Jonathan has been a performer in one of these shows and for him and the cast, it has been an eye opening experience.  Since the house lights don’t go all the way down, the cast can see the audience and therefore can see what they do and do not react to.

During the Q and A segment a woman shared her story about her daughter who loves Cinderella and watches it over and over, especially certain parts.  She asked if there was any way for Disney to rethink the way that they release movies so that they aren’t so hard to find when they need to replace them. Jeff and Jonathan both said that they would talk to the powers that be to see what could be done, but it got my husband and I thinking about a possible way to collect donated Disney movies and pass them along to the families who may need them.  It moved us to know that there were children out there who truly NEED to watch these movies and there are many families who just get rid of them, so why can’t we us this as an opportunity to fill a void? It is still a seed, but if you have any DVD’s or VHS cassettes of Disney movies that you are willing to donate for families of autistic children, please email us here and stay tuned for additional donating opportunities!

In conclusion, we walked away from this presentation feeling inspired and wanted to know more about Owen and his family.  We can’t wait to read Life, Animated: A Story of Sidekicks, Heroes, and Autism by Ron Suskind and are looking forward to the full documentary, Animating Owen, from Roger Ross Williams. You can also learn more by looking at Ron and Cornelia’s website, www.lifeanimated.net, which was created to share Owen’s story as well as offer a platform for others to share stories of their own through the Autism Affinities Project.

 
 

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