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How YouTube helps an autistic boy navigate the world

One young student is learning how to present himself to others by watching videos and creating them

Ethan loves watching the Super Nanny show. When he re-enacts the scenes of whining children, he is testing if other caregivers will respond in the expected manner as in the show. While behaviorists call this ‘scripting,’ interweaving his reality with the show allows him to predict how people might respond, based on what happened on TV. When others refuse to play along and insert themselves into the story, the ambiguity triggers a stress response in the face of the unknown.

Ethan’s iPhone offers a unique glimpse into the way he sees the world: His camera roll serves as a catalog of human responses to moments that he will encounter in his own life, and hopes to replicate. Having a picture of his sister opening a birthday present will help him know how to contort his face, if and when he receives a gift. Because he is still learning how to assign weight to these reactions, he might whoop for joy when presented with a small piece of news.

The other day, I saw him examining a framed print on the restaurant wall. Many of the photographs were of various local landmarks. The one that he was squinting at had signs from the local highway. “Hey, Ethan, what’s the most interesting part of that picture?” Without skipping a beat, he said, “I like seeing how far things are.” Unchanging patterns are valuable for autistics: Inanimate mile markers become your best friends who never judge you or change how they react to you because of your behavior. The distance from Earth to the moon is 230,100 miles today regardless of last night’s meltdown. Ethan wants to quantify social behavior into a formula that won’t change, and leaves no room for error.

During our Bar Mitzvah preparation lesson, he was very excited that he nailed the Shema prayer on the third try. He insisted on video-recording himself so he can catalogue my reactions to his stellar performance for later. Watching this video over and over reinforces his success and concretizes his quest in knowing how to behave when mastering something complex.

Unlike ABA therapy, learning how to behave in a way that doesn’t involve being explicitly told how to behave instills a pride in the ability to craft a response that is not only appropriate, but also admirable by the majority.

We have gotten into the habit of starting every new prayer rehearsal with, “Shall we do this frightful piece?” And then following the prayer with, “Oh, wasn’t that frightful?!” These little scripts are deeply symbolic of a time when Ethan was terrified of learning anything that required intense thought. Now, they serve as humorous bookends to immortalize his journey of overcoming the overwhelming to-do list involved in Bar Mitzvah prep, piano lessons, and other requirements in his life. His new-found pride made him wonder if, through his video, he can become that predictable character on screen so others could model themselves after his script. The idea of a collective stimfest intrigued him.

Ethan accepted my suggestion to rotate the phone horizontally so the viewer can see the most on their own phones. Positioning his phone involved breaking rules that he usually followed in taking videos. The viewers entered Ethan’s world by proxy, and began to take center stage to his own reality. Now, he stimmed on the number of views and loved finding patterns in the number of likes and comments posted.

To kindle his Theory Of Mind, I asked, “Ethan, how do people find videos to watch? They search for it, right?” I explained that nobody is searching for his petname for me, “floopshybunchmunch frightful work.” Rather, they are searching for “practicing Shema prayer in Hebrew.” Now, the video title and tags match the potential viewer’s interests.

One day, he showed me a video that he took of a hotel-room door. The doorknob had a Do Not Disturb sign that was vibrating from the loud music from inside the room. He was giggling hard because the F-word in the lyrics was clearly audible in every line of the lyrics.

Ethan: “Isn’t this rude? I think I should call it, ‘rude people music.’”

Me: “Okay, but do you think people will search for that?”

Ethan: “How about, ‘loud music heard from rude hotel guests’?”

And just like that, he went into the mind of the viewer. The title ultimately became “Rude hotel guests blasting music until the elevator”. The description was all his: “I am in a hotel and some ladies are taking a vacation from the manners. Why would they put the do not disturb sign when they are disturbing other people?” In this leap of understanding, he has made the story accessible to others.

With his YouTube videos, Ethan has learned that he has the ability to control how to portray himself. He also learned how others prefer to see him. Pondering how people would respond to his videos has transformed how he behaves off-camera. Realizing how easy it is to create a script for others to emulate exposed to him the superficial nature of TV behaviors that cannot always apply, especially in higher learning. For Ethan, our ‘frightful’ schpiel motivated him to move beyond provoking a negative response based on TV. In reframing the stim value of scripting, he has found meaning in a more mature predictability and is mindful of interactions without compromising his authenticity.

This past week, we created a parody video of 7th graders on a flight to Disney. Except, the 7th graders are learning science and math from the onboard safety instruction manuals. The flight attendants are the teachers, and the oxygen masks help people overcome the pressure of the classroom. The script was entirely his, and the humor was uncanny. By intentionally hiding his birthmark during the recordings, he controlled how he would be seen by future viewers. His carefully planned portrayal reflected his renewed appreciation for his autistic identity.

While the final version was uploading, we flapped off into the sunset together.

About the Author
Henny Kupferstein is a doctoral student with a specialization on autism research at the California Institute of Integral Studies. She earned a Master of Arts in Transformative Leadership and holds a Bachelor of Science degree in Music. Currently, Henny maintains a private practice and teaches non-verbal students to sight-read music for piano in the classical tradition. A frequent presenter, Henny is also a consultant to parents and educators on the subjects of music, perfect pitch, autism, and sensory integration.
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