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By William Stillman
“He’s liable to hit you,” I was warned by Garrett, the afternoon-shift staff person. But when I didn’t respond, Garrett reiterated, “Sir, did you hear me? Daniel’s liable to hit you.” I assured Garrett that I heard; but his well-intentioned caution is something I’ve learned to tune out: superfluous, sometimes over-exaggerated information about the presumably violent reputations of individuals with developmental differences who have historically been challenging to serve. Still, I decided to give Daniel the benefit of the doubt as I entered his one-person, suburban row-home. My intention was to introduce myself, inform him that I would be consulting with his team, and to let him know that my role was to support his staff’s understanding of his true intellect.
Daniel is thirty-five, has autism, and does not speak. For fifteen of his years, Daniel lived in an institutional setting presumably because he became increasingly difficult to manage at home; and appropriate education and community services were scarce. To anyone who is unaware, institutions are large, usually rural, congregate settings that at one time warehoused tens of thousands of citizens deemed “mentally defective.” People like Daniel were managed and controlled whenever necessary, and, if determined educable, were provided rudimentary schooling. If deemed simply trainable, menial and repetitious tasks were prescribed in the hope that some would acquire fundamental trade skills.
But Daniel, like the last of those to be “de-institutionalized,” bucked the system. Unwilling to relinquish their spirit, and clad with an iron will, such individuals were labeled as “severe behavior problems” for possessing the audacity to rebuke the standards. They would not complacently comply but, instead, asserted their right of refusal. So, indeed, stalwart Daniel came with a long history of which I, purposefully, knew precious little. Not that it mattered; things would be different once he met me, I was certain, I thought to myself as I ascended the narrow staircase to Daniel’s second floor bedroom. After all, I had been dubbed the “autism whisperer.” I was, in fact, equipped with a communication board, a QWERTY-keyboard arrangement of the alphabet in a wooden frame that I intended to offer Daniel in case he wished to type his pent-up thoughts and musings. And, without being informed, I had already sensed the emotional longing Daniel held for his mother—not because she had passed, as I initially thought, but because of a detached relationship.
However my preconceived vision for an instantaneous brotherhood with Daniel was quickly cast aside. As I cautiously made my way to his bedroom, I felt overwhelmed with anguish. There, before me, lay Daniel, scruffy-bearded, slight and sinewy, and wracked with physical and emotional pain—intuitively, I just knew it. As I slowly, carefully introduced myself, my portable keyboard clutched in one hand, I inched my way toward Daniel, prostrate among the disheveled bed linens. I told him I believed that he was intelligent—I could tell just by looking at him—and that I desired to help his staff see it just as plainly. I wanted to create a shift in their understanding, I espoused as I displayed the keyboard, to illuminate the truth and to dismantle longstanding myths. Daniel appeared to take it in. “May I sit here?” I asked as I tentatively perched on the edge of the mattress.
Daniel snapped. He cried out, slapped his head, sat up to swing at me, and kicked at me from under the sheets. “Okay, okay. I get it. I’ll leave,” I assuaged him. “I’m sorry you don’t feel well. I’m come back to say good-bye before I leave,” I said as I backed away and returned downstairs. So much for the autism whisperer, I felt stung and was left wondering where I went wrong. This gentle, unobtrusive approach was previously successful with countless others, and it wasn’t like Daniel wasn’t expecting me—his staff had prepped him for my visit all day.
The narrow, L-shaped living room adjacent to the staircase was just large enough for me to sit with the house supervisor and Garrett, who was still on-shift. I suggested we turn off the television so that we could commune without distraction and so that we could be clearly overheard by Daniel listening upstairs. I acknowledged that I hadn’t exactly been given a warm reception but that it was important to maintain our focus on presuming Daniel’s intellect within, to interpret “behaviors” as communication, and to interact with Daniel with a belief in his full competence. It was bound to be a process that would play out over time but establishing safe and trusting relationships was the key. Afterwards, as I said my farewell, I stood in Daniel’s doorway to tell him that I’d hoped he had been listening, which he almost certainly had been.
Two weeks later, I was scheduled for an official consultation meeting during which I would make leading inquiries of those who knew Daniel best in order to craft a plan of recommendations to Daniel’s team. Prior to our gathering in a private room at the local library, I stopped by Daniel’s place again. This time Daniel was downstairs, lying on the sofa. I sat across from him and, once more, gave him my spiel about his intelligence and the change I envisioned. In response, Daniel reacted strongly: yelling, slapping his head, striking out at me, and stripping down his pants and underwear and throwing them in my direction. (I later learned when he does this it means “go away”—no kidding!) Daniel’s communication that he didn’t want to hear what I had to say was clear and direct.
On the way to the library, I got on to processing my now-two encounters with Daniel, both of which were very similar. When gathered in our meeting room, Spencer, another staff person, requested to discuss Daniel’s refusal to shower, his dislike of cold water, and why he urinates in bed but won’t get up to change. I added these areas to my mental agenda which was already preoccupied with deconstructing Daniel.
The youngest staff member in attendance, Kyle, was twenty-two and, despite his youth, he was seasoned in working with kids with autism at a campground for years in summers prior. His approach to interacting with Daniel was one of unconditional acceptance, patience, and respect. He shared that he had used a keyboard identical to mine except with bold letters spelling YES and NO on the reverse. When Kyle asked Daniel to make choices using the keyboard, Daniel would do so; his actions on the follow-through verified the authenticity of his decisions. On a couple occasions, Kyle said, he gave Daniel a multiple choice for meal preparation: select “C” for chicken, “H” for hamburger, or “S” for sandwich. Daniel, again, followed through accurately. Not only was this profound, knowing what I knew about Kyle’s relationship with Daniel, I wasn’t surprised. Most curious was that Kyle contended Daniel wouldn’t do this when anyone else was watching.
Taking my experiences with Daniel into account with the background information shared with me, here is my most respectful speculation for decoding Daniel’s autistic hieroglyphics:
Enter Stillman, who comes in talking about how he’s going to shake things up and you’ve got a threat. In hindsight, I suspect Daniel doesn’t want to hear how smart I think he is because he doesn’t want me messing with the good thing he’s got going. I’m liable to blow his cover. Not only is it easier to pretend to be mentally retarded, it’s safer. Once true intellect is established, the bar is raised and adult responsibility is expected. For someone who’s become accustomed otherwise, that’s way outside their safety zone—a terrifying prospect, in fact.
Still, this is not beyond Daniel. He’s already showing glimmers of his true reveal by communicating with Kyle in ways that are unprecedented, just not in front of the others so they’ll expect it too. Besides, they haven’t earned it. Developing safe, trusting, respectful and reciprocal relationships with Daniel that presumes his intellect is the real challenge of the team. It will be a process that will take time, maybe even years, but with a dedication and a perseverance to match Daniel’s own attributes, they just might pull it off.
©2009, William Stillman (www.williamstillman.com)