“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:

• Daniel’s dislike of showers and cold water: In congregate, same-sex settings, such as prisons, rapes often occur in shower rooms. Those who do not speak make for the most likely victims for obvious reasons (they can’t tell). Further, in institutions, cold water showers and tub baths were sometimes enforced as behavior modification techniques.
  We might speculate that Daniel holds deep-seeded trauma for one or both instances. We may never have proof but we can explore ways to make bathing a pleasant experience through setting the water temperature where Daniel requires it, and using inviting scents and soothing music to calm and quell any anxiety.
• Daniel’s disrobing: This, too, is a clear communication. Why not just take off your shirt? Or why not take off your pants alone? He’s doing neither; instead, he’s leaving his shirt on, taking off his pants and taking off his underwear. In processing this with Daniel’s team, I asked one male staff member to explain what would happen if he did the same thing. “People would be shocked,” he admitted. “Yes,” I said, “people would be shocked.” There’s a certain shock value in exposing your genitals to those unsuspecting. It has a tendency to repulse and socially isolate others. But this is the intent—to keep others at a distance. What Daniel doesn’t know (and what I didn’t share with him) is that after my many years in this field I’ve seen it all, and there’s nothing he could do that would shock me.
• Daniel’s intentional urinary incontinence mornings upon awakening (he knows how to use a toilet and hadn’t done this prior to moving) and subsequent refusal to clean up: When someone wets themselves, there’s a release; but it’s also warm and it has a distinctive scent. Kyle also added that mornings are when Daniel seemed most likely to be in a depressed mood and would sometimes weep. Even though the institution may have been imperfect, it was still Daniel’s home for fifteen years. Jamar, a current staff team member, had also worked with Daniel at the institution. He asserted that the environment there often had an odor of urine.
  We might speculate that Daniel is homesick upon awakening and realizing he’s in the “new” place. Like many of us, those with autism are likely to link visuals and aromas in memory to specific places and events. I believe that Daniel is still going through a transition process, and urinates (refusing to change at first) in order to call up memories of home. His staff concurred and Ann, a nurse, shared that at the autism summer camp (at which Kyle also worked), kids were more apt to cry and feel homesick first thing in the morning. Resolve requires our compassionate patience and understanding.
• Daniel’s selectivity for beginning to demonstrate a proclivity for communication with Kyle but holding back when others are present: This one’s easy. It’s all about the quality of the relationship, and the degree of trust and safety within that relationship. Clearly there’s the inkling of something significant developing in a partnership Kyle has established with Daniel. Transferring this advantage by cultivating similar relationships with Daniel’s other staff is the trick. This may be easier said than done depending upon each individual staff person and how they approach their job (and Daniel).
• Daniel’s apparent disdain for me (although after the consultation we went back to the house and Daniel gently touched my arm—a good sign): Let’s remember that for his entire life, people around Daniel believed him to be void, vacant and unaware. I have known people who have stopped trying to prove otherwise because their efforts go undetected and unobserved. Instead, behavior management and control becomes the norm, and age-inappropriate activities (in keeping with one’s supposed mental capacity instead of their chronology) become standard. A vicious cycle ensues in which someone like Daniel eventually becomes what others believe, reflecting back what is projected upon him. Eventually, it becomes easier to play the game, feign helplessness, and exert some measure of control by manipulating people, the environment, and perpetuating learned helplessness (feed me, dress me, bathe me, clean me up).

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)

William Stillman is a nationally recognized autism spectrum self-advocate, speaker, and award-winning author of numerous special needs parenting books including his latest, Empowered Autism Parenting. He has advocated for people with different ways of being since 1987, serves on several autism advisory boards, and writes columns for Autism Voices and Choices and Children of the New Earth online magazines. In his work, Stillman seeks to passionately transform perceptions of autism from those defined as “afflicted sufferers” to those with valuable gifts to offer the world.