WHO ARE YOU?

Billy is at an art studio where he paints most Mondays. It is a spacious, cluttered warehouse filled with visual creations and accompanied by sonorous and dissonant sounds. It is Beatnik and 2011 wrapped up in one. A current time warp.

This Monday Billy arrives and starts to prep for his studio art session. He places his communication device and his art schedule book on the 1960’s fashionable scratchy metal secretary desk. Rummaging through the plastic milk carton, he finds the radio and places it in an exact spot on the desktop. He lifts the hefty CD player (500 CD’s later-a lifetime collection from a now almost defunct Borders) out of a lime green case and sets it neatly by the soon to be obsolete Sony player. Billy is always precise. His painter apron accented by vibrant smears of paint hangs on a hook in an adjacent interior closet-room. Without a cue, Billy puts the ankle length blue denim apron on, wraps the belt around his waist, ties a bow and then double knots it until there is no remaining string to use.

And then Billy picks up his communication device and navigates to the Dictionary, selects the category “people” and then presses the “friends” subcategory. Immediately, he presses “more friends” which reveals a page with many empty cells. I watched with keen interest but frankly I had no idea what he was about to do. Billy walks up to each person who happened to be sharing the space with him that day and pointed to the empty cell on his friends page.

Standing, he bent slightly over so that each person could view what he pointed to. Focused, direct, and earnest, Billy acknowledged everyone in the room. I gasped as I realized what was amiss. I knew what Billy wanted to say.

But, the pivotal question “Who are you?” was not on his device. Billy, however, was not deterred. Each individual he approached, he pointed to the empty cell as if to say your name belongs and put his hand out for a handshake which was returned in kind. Billy’s simple gesture of recognizing others tied them together in this painter’s niche. Despite the fact that his language system was compromised, Billy took the time and effort to affirm each person’s presence in his life at that moment. I felt humbled by his act of kindness.

I went home that day and made sure that Billy would always have the ability to ask ‘WHO ARE YOU?” The question is programmed in multiple places on his communication device. Billy already knew that the question was urgent and applied it in his life. What I learned that day was that I too needed to ask this question. Like Billy, I too yearn to be in the reception line with others.

Billy’s White Paper

A white paper (or “whitepaper”) is an authoritative report or

guide that often addresses issues and how to solve them. Wikipedia

If you can’t speak and your communication device does not contain the word, picture, or symbol for a white bathroom rug you need, what would you do? The answer doesn’t come quickly because it requires creative problem solving. It also demands faith that the person you work with believes you have a message. In other words, the success of the social engagement is predicated on the often overlooked, devalued, and even maligned concept that an individual on the autism spectrum is a communicator.

So when Billy realizes that his device does not contain the word “rug”, what does he do? In the heat of the moment, Billy’s frustration mounts. This is a normal human response. What is extraordinary is Billy’s uncanny persistence. Billy believes he is a communicator and so even the byzantine mazes he must sometimes navigate to make his point are worth the dead ends.

So a member of Billy’s team follows his incomprehensible lead. With his device, Billy asks for the key to unlock the door that leads to a basement office. Billy explains to Natalie that he wants “paper”. They descend the steps and Billy walks to a stack of white typing paper and holds up the white paper to his friend, Natalie. Most adults would raise their hands up in the air in complete exasperation. If that too eerily familiar scenario happened, Billy would be silenced. The Billy I know would cease to exist.

Like good detectives, however, Natalie and Billy revisit the scene of the communication altercation. The bathroom is the nexus. Billy stands in front of the vanity clutching the white paper. Natalie scans the room and realizes that the bathroom has only one white organic cotton rug where there should be two floor covers. She looks at Billy. Billy looks at her. Placing the square white paper in front of the vanity, she says “Billy do you mean rug?” Billy nods and clicks his tongue between his lips. The white paper is removed and the white rug is put in its rightful home. Relief- yes Jubilation –yes Communication – you bet!

In the end, it was a white piece of paper that became an ad lib symbol for a missing white bathroom rug. Billy knew that ultimately if he persisted and his communication partner waited, listened and encouraged him, Billy would break through the glass wall and his voice would be heard.