Wednesday, April 6, 2016

Tuned Into Acceptance: An Autistic Teen and His YouTube Channel

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today's story is from Henny Kupferstein, about how her own autistic insights helped her guide her friend Ethan into creating videos that demonstrate his autistic perspectives, as well as accommodations that work for him.

Henny Kupferstein

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.

Henny and Ethan
[image: Selfie of a white woman and a white boy,
both making silly expressions for the camera.]
The other day, I saw him examining a framed print on a restaurant wall. Many of the photographs were of various local landmarks. The one he was squinting at had signs from the local highway. “Hey, Ethan, what’s the most interesting part of that picture?,” I asked. Without skipping a beat, he said, “I like seeing how far things are,” referring to the inanimate mile markers that can become your best friends -- who never judge you, or change how they react to you because of your behavior. Unchanging patterns are valuable for autistics: 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 similar 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 so complex:

Learning how to behave in a way that doesn’t involve being explicitly told how to behave (as in ABA therapy), instills a pride in his ability to craft a response that is not only appropriate, but also admired by the social 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, the scripts serve as humorous bookends, to honor his journey of overcoming his overwhelming to-do lists of Bar-Mitzvah prep, piano lessons, and other requirements in his life. His newfound pride made him wonder if, through his videos, he can become a predictable character on a screen, that others can use as a model themselves, including his script. The idea of a collective stimfest intrigued him.

Ethan accepted my suggestion to rotate his phone horizontally, so his videos can fill viewers' screens on their own phones -- even though positioning his phone that way involved breaking some of his own rules about taking videos. And now viewers could enter Ethan’s world by proxy, and he began to take center stage to his own reality. Now, he stimmed on the number of views his videos received, 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 who wanted to watch his videos would be searching for his petname for me: “floopshybunchmunch frightful work.” Rather, they are using searches like  “practicing Shema prayer in Hebrew.” He now understands that the video title and tags match the potential viewer's interests.

One day, Ethan showed me a video that he took of a hotel-room door. The doorknob had a Do Not Disturb sign, which was vibrating from the loud music from inside the room. He was giggling  because the F-word 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 his leap of understanding, he 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 follow exposed to him the superficial nature of TV behaviors. He now understands that the way other people behave on TV is not always appropriate in real life, especially in higher learning. This understanding, applied to our own ‘frightful’ schpiel, motivated him to move beyond provoking a negative response. And 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.

We recently created a parody video of seventh graders who were on a flight to a Disney Theme Park. The 7th graders were 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 own autistic identity. While the final version was uploading, we flapped off into the sunset together.