Wednesday, March 12, 2014


Last week, Ron Suskind published an article entitled "Reaching My Autistic Son Through Disney" in the New York Times ahead of the release of his new book, Life Animated.  I am anxiously awaiting my chance to read it and have read his NYT article several times now through tears.  Please take the time to read it by clicking above because it will reveal something to you, even if all you know of our family is through this little blog.

This is Keegan.  

98+% of Keegan's speech is scripted from movies or tv shows.  Disney is by far his preference, but he won't turn down most good animation.  Most of the remaining speech is from scripts we have given him, i.e. giving him the words to ask for a glass of water, which he then repeats in the exact intonation we taught him originally.  

I will never forget the day when he was about 3 1/2 years old we realized Keegan's gibberish was actually words.  Monsters, Inc. was playing on the tv, but Keegan was facing the other direction.  He made sounds we had heard him say often at the time, "tees e a oo ed, ooh ahh ooh ahh ooh ahh."  But this time, without facing the tv, we watched him mime the scene with the sounds perfectly.  It's when Mike is training Sully in the morning before work.  "Twins in a bunk bed!" Then Mike mimes scaring kids in a top bunk, bottom bunk, back and forth, before falling flat on the floor.  Gray and I froze.  "Twins in a bunk bed!"  We rewinded it and played it again, and Keegan did it again and again.  

After the strokes and macrophage activation flare in September of 2011 that left him practically in a coma and robbed him of the little speech he had developed, he sunk deeper into his scripts.  Three months later, he received an autism diagnosis.  He technically has brain damage from medical trauma that mimics autism (each characteristic can be tied directly to an event on his brain scans), but the same treatments for autism work for Keegan, which is really all that matters.  At that point, I began to fervently research scripting and echolalia.  We were desperate because the only time Keegan was happy was watching his movies.  Even when he wasn't watching, there was a constant movie playing in his head, and we could rarely pull him out of them, back into reality.

A few months later, I tried jumping into one of his scripts from the movie Cars.  His speech was still mostly sounds and inflections with a few discernible words, but when you watch the movies as much as we do, you pick up on the inflections and context.  I don't remember what line it was now, but before Keegan could say the line, I knelt beside him and said it myself.  He looked me square in the eyes fully for the first time since that flare.  And he smiled.  His HUGE, beautiful Keegan smile.  We exchanged a few lines, and he regressed into a different script that I couldn't follow.  I sat and cried as he played around me.  It was his breakthrough.  The more we identified the scripts he was saying, the more we were invited into his world.  To this day, I must stop what I'm doing whenever I am doing it to be Pumba to his Timone singing "Hakuna Matata."

Keegan has not progressed nearly to the levels Owen has over the years, but I am hopeful for more as he grows, especially if we continue to learn with him.  Already, he has moved on to using his scripts in context when he needs to convey a need, want, emotion, or desire.  If he needs help, he doesn't just ask for help.  He is Pete in Mickey Mouse Clubhouse, "umm, guys, a little help here?"  But sometimes, his scripts are just a source of comfort for him.  A safe place he can go to escape.  TV or digital device unnecessary, there's always a movie playing in his head.

Now I have a clearer understanding of why.  Ron writes in the NYT article:
"But what draws kids like Owen to these movies is something even more elemental. Walt Disney told his early animators that the characters and the scenes should be so vivid and clear that they could be understood with the sound turned off. Inadvertently, this creates a dream portal for those who struggle with auditory processing, especially, in recent decades, when the films can be rewound and replayed many times.  The latest research that Cornelia and I came across seems to show that a feature of autism is a lack of traditional habituation, or the way we become used to things. Typically, people sort various inputs, keep or discard them and then store those they keep. Our brains thus become accustomed to the familiar. After the third viewing of a good movie, or a 10th viewing of a real favorite, you’ve had your fill. Many autistic people, though, can watch that favorite a hundred times and seemingly feel the same sensations as the first time. While they are soothed by the repetition, they may also be looking for new details and patterns in each viewing, so-called hypersystemizing, a theory that asserts that the repetitive urge underlies special abilities for some of those on the spectrum."

But I worry about what I may hear from him one day.  Ron learned that his son, Owen, felt left behind when he identified himself as a sidekick to the hero in a Disney movie.  Or when he finally revealed how lonely his world could be by talking to his dad impersonating another sidekick, Iago, from Aladdin, "I'm not happy.  I don't have friends.  I can't understand what people say."  Are these emotions I am ready to hear from Keegan?  No, I don't think I am.  They are things I have feared and grieved, especially this year as all the neighborhood kids have gone on to kindergarten without him.  In his Disney-filled world, he is happy.  He is safe and full of emotion.  But when the movie is over, I'm afraid of him feeling lost.  He has endured so much more than any other six-year old should have to endure.  He has come out fighting each and every time.  I have guarded his physical heart and his health with every breath of my body.  I'm not sure how well I can guard him from the emotional pains of reality if we continue to break into his world or bring him out into our own.

Each month, we are seeing progress from Keegan though, and his scripts continue to be a large part of that success.  Perhaps he does watch too much television and movies.  But I wouldn't trade it or him for the world.

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