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Through the Lens of Autism

May 25, 2010

by Jeremiah Kim

A year ago I started at a community-based inclusion program for school-aged individuals for autism. Being my first in depth exposure to the population, I sought out and internalized plenty of tricks of the trade to ensure my success as a coach. Yet one year out, and upon further reflection, I find myself in possession with deeper life lessons that have transformed the way I perceive the world and the company I keep on it.

In a relatively short time, these kids have managed to identify and challenge far reaching assumptions about the human experience that I simply took for granted – what we need and why we need – and turn them on their heads.

1. Behavior is a choice and always communicates something.
Anyone that has ever worked with individuals with special needs has sooner or later learned that aberrant or abnormal behaviors come with the territory, and with individuals with autism, many of whom have limited language skills, behaviors can take the form of scratching, biting, and kicking. These behaviors can present a steep learning curve and to be honest, when I started at CCC, I was afraid of them. In fact, I tried to avoid them. Instead of long-term progress toward individual goals for the kids, I was more worried about the short term “success” of having a behavior-free day. That was, however, before I understood the function of these behaviors.
While some of the participants display physically aggressive behaviors, some engage in self-injurious behaviors. Still others deliberately disobey rules in order to be disciplined. And behind every single one of these behaviors is the deep desire to be known and understood. Slowly, I realized that managing behaviors is completely useless because unless the source of frustration/anger/fear/anxiety is addressed, the behaviors will persist.
In my life too, I’ve seen many individuals, absolute strangers and the closest of friends, make choices that are hurtful and unhealthy. Truly, I’ve seen this in my own life as well. And yet, as quick as I am to point those things out, I now realize that all of these choices we make, I believe, come out of a place to be known and understood. And unless that that core desire is addressed, and the wounds of our past are healed, we can never escape the cycle of self-injurious behaviors that, even for just a fleeting moment, bring us the safety and comfort of being in control.

2. Touch is powerful.
I’m not sure if it’s because of my ethnicity, my personal temperament, or the interplay of both, but I’ve never been very good with physical touch. In fact, I’ve always played the part of the awkward hugger, as many of my friends will readily testify. So, the area of touch has been a huge growth area for me.
When I started working with the kids, I chalked up their unique sensory needs to their “special needs”—the idea that though these needs are indeed abnormal, it was a necessary medium of engagement. So reluctantly, I hugged, squeezed, held hands with, and even occasionally pounded these kids with pillows (though the “reluctant” clause isn’t quite as applicable to the last activity).
But as I grew in my understanding of the link between behavior, needs, and communication, I realized that for many of these participants touch is a powerful source of affirmation. It reminds each of them, in a very tangible sense, that they are “here,” they exist; it is an acknowledgement of their being.
Such a truth has far reaching implications I’ve learned, for myself and for those around me. Even as an extremely awkward person, my awkwardness points to a desire to be comfortable in my own skin, literally. And thus, my motivation behind all of my actions, including but not limited to my sexuality, is a search for someone to say that I am here, I exist, and that I am worth something.

All of which leads to:
3. People are individuals with individual journeys and experiences that will tremendously affect their potential for success.
This was one of the easiest lessons for me to learn at CCC, yet one of the most difficult to internalize and, as we say at CCC, generalize into all areas of my life.
One of the pillars of our program at CCC is that each of the participants is an individual, meaning that they each have unique proficiencies and communication styles, along with unique struggles and growth areas. I quickly learned that in order to earn the right to speak into each one of the participants’ lives, I needed to acknowledge and embrace their uniqueness. In fact, failure to do so would surely spell my doom. I couldn’t treat these kids with a cookie-cutter definition of autism nor implement a general plan to address across-the board issues. And once I internalized that prerequisite, it seemed as though 100 or so doors were immediately flung open and I found myself emotionally invested and engaged in each of the participants, rooting for their success, commiserating in struggles, and triumphant in victories.
One day, while I was basking in my brilliance as a human being and coach for unlocking the secrets of the kids I work with, a dark and unsettling reality hit me like a ton of bricks – how often I treat everyone around me with a cookie-cutter template of what humanity should be. Coupled with all of the expectations that such an assumption comes with, I’ve often found myself extremely frustrated with people in my life, yet never once thought my perspective as the source. In fact, I’m slightly ashamed to say that it’s taken me no sooner than twenty-two years, coupled with my experience with these kids, to challenge my stunted view of others. Philo of Alexandria, a first century Jewish philosopher, is said to have penned, “be kind for everyone you meet is fighting a great battle,” and I am beginning to grasp the gravity of such a statement.

When I first started working with special needs, I focused on the deficiencies – what these kids couldn’t do. And such a perspective can be quite discouraging at times. Yet, I’ve also seen the grace-filled opportunity it provides for tremendous growth as it challenges the kids beyond themselves. It’s this opportunity that I believe we shortchange ourselves from when we walk through life hiding our true selves from each other. We’ve learned to cope with our faults in a way that communicates that we are in control, when in reality we are all struggling with the same deep desires – to be known and accepted. In this way, these aren’t “special” needs, merely human needs and we’ve each been given an opportunity to embrace, together, the greatest truth of all.

We are so much more than the sum of our deficiencies. We are, in fact, valuable beyond worth, by virtue of our mere existence and even our flaws can be fashioned to make good. We can’t do it ourselves, but there is hope. The question is: will be believe it?

2 Comments leave one →
  1. Marc Wallis permalink
    May 25, 2010 4:21 PM

    i really enjoyed this

  2. Marc Wallis permalink
    May 25, 2010 4:33 PM

    Great insight that the needs of the “special” are truly universal. We, and I include everyone in this pronoun, ‘special’ or otherwise, are all seeking to know and be known and be accepted. The knowledge of this fact is a breaker of barriers and a robber of arrogance, and a step toward deeper relationships.

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