Oct 10, 2013 0 Share

Under Construction

"Work in Progress" sign with traffic cones around it.

It occurred to me last night—thanks in part to Temple Grandin's latest book, “The Autistic Brain: Thinking Across the Spectrum”—that perhaps my brother Willie's experience of the world is akin to living in our home during this renovation season. This is what it's like: Sounds are intermittent, unpredictable, and often too loud. Everything is akimbo, routines and objects alike. Items are jumbled up, and I want, desperately, to put everything in order. I love having things perfectly in place, and construction means that everything is uprooted. (When the kitchen floor varnish finally dried and we were able to move our refrigerator from the living room into the kitchen after 10 months, I danced for joy.) With so many projects in process at once, it's tough to know where to focus, literally and figuratively. Renovation is a disorienting experience, made more challenging by the lack of a definite endpoint. My husband Jonathan and I frequently tell each other, “Imagine what it's going to look like when it's done,” and, “It won't be like this forever,” but still, we don't know how long the process will take. 

So imagine going through life in kind of constant, internal “renovation.” It's nearly impossible for people like me, people who don't have autism, to comprehend how overwhelming that must be … what an assault on one's senses, on one's sense of familiarity and comfort. If my brother Willie's experience of the world is like that—which I strongly suspect that it is—I have a whole new sense of compassion for him. Or perhaps I should say that my compassion has deepened with newfound understanding. As my husband works diligently to sand our floors (and I work diligently to tune out the sander and get my writing done), I keep thinking of Willie. I think about all the times I took for granted that my brother could “do better” … when, in reality, he was doing the absolute best he could. He was processing his experiences as effectively as he knew how. 

The practical difficulties of living in a “renovation zone” are very real, and at times they overshadow the situation's more intangible gifts. But the intangibles are there, and they matter. In this season, I've practiced greater patience with myself and my environment. I've allotted more time to complete tasks, which leads to a slower, sweeter pace, and a lot less rushing around. And while I love to “finish” things, I've come to accept that, in many ways, our work is never done. The construction--distracting and loud and tedious as it can be—has been my teacher. Likewise, experiencing life with autism confers some specific strengths, difficult as they may be to discern. In “The Autistic Brain” Grandin writes, “I’m certainly not saying we should lose sight of the need to work on deficits. But … the focus on deficits is so intense and so automatic that people lose sight of the strengths … If even the experts can’t stop thinking about what’s wrong instead of what could be better, how can anyone expect the families who are dealing with autism on a daily basis to think any differently?” 

Indeed. It takes an exceptional family to shift that focus, just as it takes an exceptional person to look, unflinchingly, at both the gifts and deficits that autism brings. But when we take the time to see the strengths inherent in the challenges, what often springs up is awe, a kind of compassionate wonder. And that same compassion helps the rest of us catch a glimpse of how so-called “ordinary” life looks and feels for people like my brother. I wonder: What if Willie's particular gifts—like his ability to imitate complex rhythms and patterns and make beautiful music, or his love for wordplay and puzzles and organization—arise in part from his experiences of chaos and overload? And if so, isn't that true for you, too? Isn't your love for writing a search for meaning, a way you make sense of the senseless? 

These thoughts are like antiseptic on a wound; though they sting at first, they also help to heal.