Found In Translation

Jimmy took two steps into our classroom, looking very much the part of a thirteen-year old boy wearing a button-down plaid shirt and khaki pants. He froze just beyond the doorway with his palms pasted to the front of his hips, his elbows jutting out at odd angles. His hair waved in a disheveled, frizzy halo around his face and his eyes flitted from eager face to eager face, hesitated on the television in the corner, and came to rest on a bare tree branch just outside the window. A linear and rather awkward smile began, hesitated, and then reluctantly stretched across his face. He breathed in and out with a large huff.

Behind him, his mother Suzanne followed. So completely adept at navigating her son’s behavior, she sidestepped the obstacle he had become in her path without missing a beat. She carried three bags and a stack of papers; a ring of keys dangled from her pinky finger. She also huffed, and maybe puffed too, and relieved herself of the packages. Suzanne turned to our “Language Problems in Students with Autism” graduate class, took a deep breath, and introduced herself and her son, who was still standing two steps into the room, staring out the window. She spoke of him in the third person as she gestured in his direction, neither action gaining his attention.

Jimmy and his mother had come to demonstrate a communication technique they had recently learned. This technique, called Facilitated Communication, has been widely debated in the world of Autism Spectrum Disorders. Roughly thirty years ago experts in the field began using it in cases of individuals with autism and other mental impairments. It spread very quickly across the United States throughout the 1980s. The purpose of the technique is to help individuals who are unable to speak, or who have dysfunctional speech patterns, find a way to communicate. Its use is based on the belief that these individuals have some type of movement disorder that affects their expression rather than social or communication deficiencies. It involves a facilitator aiding an individual in typing out their responses, thoughts, ideas, feelings, etc. Some studies have questioned the role and influence of the facilitator in this technique, and many of these studies have determined that instead of the individual leading the communication, it is actually the facilitator who is controlling the expressions. The exercise on this particular evening may not have settled the question of the merits of applying Facilitated Communication to the broader autistic population, but it did open a completely different door for me. In reality, though, it was Jimmy who triggered that opening , and FC allowed him to do so.

Because of the debate surrounding FC, I was curious to see it in action. After giving us a brief map of their journey to this point in Jimmy’s life, Suzanne was able to break Jimmy out of his statuary position with one word, and he took a seat at a desk facing us. A small keyboard-looking device materialized from within her many bags. Smaller than a normal computer keyboard, with a slim screen at the top, this device did not look as sophisticated as I thought it would. It reminded me very much of a Speak-and-Spell, without the dandy handle. Interestingly, at this point, Jimmy began speaking, and his voice also reminded me of this childhood toy. It was a voice that was oddly both nasal and guttural, and which echoed bits and pieces of his mother’s monologue in the tune of Robotron. Suzanne pulled up a chair behind Jimmy on his right side. She quieted him down by asking if he would like to begin typing. He pointed to a key that his mother indicated was “Yes.” Facing forward, with his feet flat on the floor and his back perfectly straight, Jimmy bent his right arm and extended his index finger. His mother placed her hand at his elbow and looked to the class.

“Please, ask Jimmy questions.” We hesitated. We looked from Jimmy to the extended finger to his mother. Sensing that we were a bit shy, Suzanne asked Jimmy how he was and if there was anything he would like to say to us, such a lovely group of people. Jimmy began typing. We held our collective breath. With his one finger he diligently tapped away. His mother’s hand did not leave his elbow. After every keystroke, his arm returned to the original bent position. I am not going to lie; it took a long time. A really long time.

“I am fine. Thank you for inviting me,” Suzanne read from the small screen, on Jimmy’s cue. She then told us that often times Jimmy plods along three letters forward, two letters back. The majority of his keystrokes are “Backspace” to correct misspelled words.

“What makes you happy about Facilitated Communication?” was the next question posed to Jimmy. From his mouth came, “Happy. Thomas. Thomas is Happy. Gordon and Thomas. On the Track. Thomas and Gordon on the track.” But his mother took his elbow, asked if he would like to type instead of talking about Thomas the Tank Engine, and he indicated that yes, he would rather type. Another lengthy interval of breathless silence ensued. As he typed, anticipation led each of us to lean forward in our seats. Suzanne indicated that we could circle around and watch from behind if we would like. Not wanting to endanger Jimmy by mixing electronics and my possible drool, I remained oxygen deprived in my chair, as did the rest of my colleagues.

“I have a voice. I want people to hear me. I reap the praise of others.” This time, Jimmy read it: fast, monotone, and automated. His mother reiterated it for us, slower, and with normal diction and pitch. We all sat back in our seats with a gasp, amazed. From his mouth were coming scripts of a children’s television program he had probably watched millions of times, but from his fingers came poetic desires of the heart.

This gave our little band of educators strength and encouragement. We were amazed by the fact that this young man seemed betrayed by his very own mouth. It brought to mind countless other students we were there to help. Questions started whizzing about the room. Suzanne slowed the noise and chose one or two for Jimmy to answer. While he typed we waited patiently for the beautiful words that were to come. And they did come. And they were met with oohs and aahs. Like the good teachers we are, we offered the praise that this young man so eagerly wanted.

In a moment of excitement, someone said, “Hi, Jimmy, my name is Katie. Do you like using this to talk to your friends?” The click, pause, click, pause began again. We waited. His mother read it to herself and asked Jimmy if he would like to share personal information. He nodded, looked out the window and repeated “Katie. Katie. Hi, Katie.”

Suzanne read aloud: “Why, Katie, I do not have friends.” The excitement from moments before fell flat around the room. We stared at Suzanne. We stared at Jimmy. Here was a young boy staring out the window seemingly without a care in the world, and yet he felt completely alone. This was the same young boy who had us all laughing and smiling with his answer of “Yea, verily,” when asked if he ever thought of writing poetry.

As our silence grew, Suzanne once again filled in by telling us that in the past Jimmy has typed, “I want people to know I am not stupid. I can be funny. I am smart.” Deep inside me, a latch slipped, a door creaked open, and tears filled my eyes threatening to pour down my cheeks. As I looked at Jimmy, who most of the population would probably disregard because of how he looked and the stream of words that came out of his mouth so awkwardly, I realized we had a lot more in common than I would have ever known. I saw in that moment that I was not alone.

Yes, I have friends. I have amazing friends. But, I also have deep hurts. I have wounds that might not ever properly heal. I don’t fit in the way I think I should. And I have things I would like this world to know about me. Things I feel like I am screaming with every move I make. Things I get really tired of always pointing out, but fear they will drift away if someone doesn’t mention them.

In that moment, I also saw that Jimmy had something I did not. He had—albeit brutal—honesty. Jimmy stated his fact and returned to looking out the window. I have grown addicted to needing my weaknesses covered; I have let my wounds fester. I feign surprise when someone finally picks up on my dropped hints. I don the tattered garments of false humility when I do receive a compliment. His way seemed so much healthier. I wish I could speak so honestly to myself and others.

I do not have ‘dysfunctional speech patterns.’ I do not have a disorder that limits my everyday life. Yet, there is something about me that regularly betrays the reality of my situation. Though it has everything under control (except maybe the trash-to-floor space ratio in my car), it has the world figured out (okay, at least the majority of it), and it formulates witty responses to the comments of my friends and enemies (well, some of the time), it sprouted and grew tall from hurts I have sustained through the years. This mangy weed is way over-grown. Deep down, I know this about myself, but in hearing the simple and honest words of Jimmy, it became glaringly obvious.

Like I said before, I do not know about the application of Facilitated Communication on a broad scale, but that night, with the help of a facilitator and his keyboard, a young man who would not be able by “normal” means to do so, expressed a message that my soul received. I was encouraged by this display of communication; reaching into the isolated world of an individual with autism is possible. But, I was also reminded that we all have hurts. We are not alone in that. There is no real point in hiding it. Maybe we just need to find ways to translate the jumbled messages, listen to each other, and then all work together to heal those wounds.