Why I Told the World My Son Has Autism


(An abridged version of an earlier post, “The Story Behind ‘Sea lion Shadow'”)

A short video featuring a gleeful little boy and a sea lion playing follow-the-leader somehow turned into a viral story that spread across the globe. That boy is my son, and I never dreamed that a visit to the zoo could be the catalyst for such a surprising chain of events and an unexpected opportunity, with my son’s permission, to share special-needs awareness.

One late winter morning my family of four took a day trip to Washington’s National Zoo. The Sea Lion exhibit was one of our first stops, and we found ourselves alone in the underground observation area. A young sea lion almost immediately appeared at the glass and stared straight at my 7-year-old son, seemingly attracted to the contrasting colors on his coat. The beautiful animal began to shadow his movements and Alex cried out, “He LIKES ME!” Little did we know at the time that the sea lion was actually a girl, named Sophie, and that Sophie regularly initiates games with her visitors. My son was simply happy that, for just a moment, Sophie was choosing to play with him. I began to record the encounter and she kept pace for several minutes, surfacing only for air. Alex, who has an Autism Spectrum Disorder, could barely contain his joy and shouted, “THIS IS THE BEST THING OF MY LIFE!” He often struggles with feelings of isolation, as do many children with special needs, and to see him so happy and in sync with his new friend struck a chord deep within my heart. Time seemed to freeze and we were mesmerized watching the two moving together as if in a dance. There was the feeling that we were alone with a magical creature in our own beautiful world.

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After a fun day at the Zoo we headed home. When I finally got to watch footage of the encounter I began to sense that we had recorded something really special, due in large part to Alex’s reaction to Sophie, and that others might like to see it. Once I had decided to share the video I found myself faced with the difficult choice of whether or not I should mention that my son has a form of Autism. I felt that, while it could stand on its own without the extra commentary, this might be an opportunity to do more than simply share a cute video. We had possibly been given an outlet to spread special needs awareness and help counteract the negativity and stigma so often associated with the subject. Revealing that Alex has an ASD could help people understand why the playful connection between the new friends seemed so meaningful. I also thought that my son’s heartfelt cry of, “He likes me!” might resonate with other special-needs parents, since so many of our children struggle with friendships. I felt it was necessary to proceed with caution, however, and I did not want to appear sensationalistic. I also realized that there was a risk that Alex would be defined simply by a label, though there is so much more to him than that. He is enthusiastic, smart, creative, funny, and unique. He also happens to have an Autism Spectrum Disorder. We are not ashamed of that, but the fact that he is Autistic is not the only remarkable thing about him. Autism is not the main defining characteristic of who he is as a person.

I had a discussion with my husband, and we were united in our hope that any possible good that could come by sharing such personal information would outweigh the risks involved. Of course, the most important person to consult on this subject was Alex himself. I asked his permission and shared my hopes that disclosing the fact that he was on the Autism Spectrum would have a positive effect on how others viewed special needs in general. He didn’t have to think about it very long before he said yes. Alex is proud of his unique brain, and often likes to say, “Different isn’t bad, it’s just different.” Once we were all in agreement I posted the footage to YouTube with the title, “Sea Lion Shadow (Little boy with Asperger’s and Sea Lion play follow-the-leader)”, and waited to see if it received any reaction.

Within 24 hours “Sea Lion Shadow” had gained the attention of local media and it continued to spread from there. People seemed to respond very enthusiastically to the sight of a little boy frolicking with a sea lion, and I was happy that we could help bring a smile to their faces. The highs and lows that followed included some of the most exciting, surprising, and exhausting moments of my life. Due to the fast-paced nature of the media I was forced to make many quick decisions, some of which I now regret. I found myself struggling at times with everything that was happening, but that part of the story is best saved for another day. By the end of the first week the video had 90,000 views on YouTube, was shown on numerous local and national television news broadcasts, and had been featured on websites all over the world. Typically only one or two sentences of explanation were provided, and I wish it could have been more, but hopefully even that small bit of information helped to foster more understanding and acceptance. A few websites linked to my blog when they featured the video, and it was encouraging that so many people cared enough to click and learn more about the story behind the story. I also found it incredibly meaningful when other special-needs parents commented and shared their thoughts. Five days after the video was posted a news station where we live requested to interview us, but we were initially leery of exposing Alex to further media scrutiny. An interview felt much different from a video where his face was obscured in shadow. We finally agreed after some reassurance from the reporter that Alex would be treated with respect and not portrayed as just a boy with Autism. Alex decided that he was excited about the opportunity and was a complete natural on camera, chatting away with the reporter like he had known her forever. I am so proud of my son, not only because of how well he handled the chaos of such an eventful time, but also because I think he is wonderful. You can watch the interview here. I just wish the final product did not have to be unexpectedly trimmed due to other last-minute news stories that emerged. Most of our discussion about special-needs ended up on the cutting room floor. Such is the nature of the media.

Now that I have shared all this I feel the need to stress that Autism is a SPECTRUM, and no two children with that diagnosis are exactly alike. The saying goes, “If you’ve seen one child with Autism, you’ve seen one child with Autism.” My son is just one child with Autism, and every child is affected differently. His story is in no way a complete representation of the full reality of Autism Spectrum Disorders. I hope that a cute video of him playing with a sea lion on a good day does not in any way downplay the very real struggles that can be faced by individuals who have any sort of special needs.

I am still processing everything that has happened, as well as some hard lessons that I learned along the way. Encouragingly, the positive feedback that we have received has far outweighed the negative. I hope that means our brief journey into the wide world of media has helped in some way to contribute to the greater good. At the very least, I think it made some people smile. Most importantly, I believe that my son benefited from the experience and was treated with respect. And in the end I can say it was worth it if even one person was helped by hearing our story, or just one pair of eyes was opened to see special needs in a new light. And that is SERIOUSLY not boring!

(Note 3/14/2017: This post was written before my family learned about the neurodiversity paradigm and started using identity-first language.)

EDITED 4/30/2105 I feel the need to clear up some common misconceptions about the video. • It was shared with Alex’s permission. ‌• The only reason I was calling out things like, “Go left… STOP!” was so that we could test if the sea lion was really following him. I wasn’t trying to micromanage my son’s play. ‌• Finally, I did not ignore my other son and push him aside so that Alex could be in a video. They each had a turn playing with her alone, Alex simply happened to be first and I happened to film it. After that all three of them frolicked for a good half hour.

UPDATE May 9, 2014: Sophie the sea lion was unexpectedly found dead this morning. She was only two years old. This is a terrible loss, and my thoughts are with the entire Smithsonian family. She was a beautiful, playful animal who brought great joy to those who visited her. My family is absolutely devastated. I am so glad we got to see and play with her one last time just two weeks ago. Thank you for being our friend, Sophie. We will miss you so much! 

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