Autism and Asperger Articles, Bill Stillman, Award-Winning Author

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Demystifying Autism From The Inside Out

Autism: Food for Thought

By William Stillman

In considering the life-experience of pervasive developmental disorder (hereafter called autism), we are fortunate to draw upon the wisdom, words and insights of individuals who can speak to that experience. We are fortunate because our friends have provided us with a glimpse through the keyhole into their private world; a world where the rules of the “big world” can’t intrude. But to step outside the door is to expose oneself; to surrender one’s vulnerability. We are fortunate because we know people who can speak to that balancing act, and describe---quite eloquently--- how they accommodate and compensate themselves. To discount, discredit, or invalidate such rich anecdotal information would be unethical. Yet, how closely do we truly listen? Why are autism “programs” valued so highly? Why are there not approaches to supporting individuals predicated entirely on the experiences of others?

We know that any approach to supporting someone with autism needs to be as unique and individualized as each individual is unique. So often when we speak about autism, we do so in very general terms. And we tend to focus exclusively on behavioral challenges---that’s what gets our attention most. (We expect compliance but often the ability to discern a function of autism from typical behavior is muddied.) Must we subscribe to one all-encompassing method of support, or can it be an eclectic mix of formal and informal supports wherein the individual can guide us to what works, what is comfortable, and what makes sense? Can we not draw upon others’ experiences in tailoring support that promotes acceptance, confidence, and tenderness?

For example, we place such a high value on verbal communication and maintaining eye contact in conversation. Our friend Barbara Moran tells us, “If you look at someone, you’re too busy (ie. distracted) to listen!” Navigating everyday conversation woven with sarcasm, innuendo, and double-entendre is difficult because we are privy to a secret code; an inherent, learned understanding of the hidden meaning in our language. (Those of us who are “slow to catch on” are often labeled “gullible.”) In Alice in Wonderland, there is a debate between Alice, the March Hare, and the Mad Hatter during the tea party. The March Hare implores Alice to “say what you mean.” To which Alice responds, “I do…at least I mean what I say---that’s the same thing you know.” But is it? Consider the story of the mother so pleased with her son’s interactions at the bakery concerning the ingredients for his birthday cake until the baker asked, “What would you like your cake to say?” To which the boy replied, “Are you crazy? Cakes don’t talk!” As in the film, A is for Autism, there is an exquisite concreteness that draws someone with autism to prize a Shell Oil tin simply because the word “shell” is written on the shell logo---it says exactly what it means. Some folks who are verbose and offer too much information need support in understanding that some social interactions are like ordering from a menu; you don’t tell the waitress your life story, you just tell her enough to get you what you want.

We know that disruptive behavior is most often a form of communicating something that otherwise cannot be communicated explicitly and succinctly. One friend describes incommunicable emotions:

Autistic people get big rages. I throw tantrums. I have waves of rage that come surging. I need to feel safe and always in control of my life, my world. It gets drowned in frustration and anger. I do wish the anger would go away. All emotions hurt...Crying is my way to show emotion. If I’m a lot happy or frustrated or angry or sleepy or afraid, I cry. Emotions hurt me. They are all too much.

We often hear others’ behaviors qualified with the phrase “for no apparent reason.” There may be times when expressed emotions are indeed quite appropriate, just exaggerated. Consider the child who wants so desperately to be held but for whom close human contact is overwhelming. The expectation may be that the child “give Mommy a kiss.” While the child may truly want to kiss Mommy, it is all too much and the kiss becomes a bite. And the bite begets itself. The child is labeled a “biter,” and there is an urgency to “fix” the behavior rather than understand its meaning. Barbara Moran tells the story of being on a school van that bounced over a pothole in the road. The boy behind her remarked that he felt as though his stomach was left somewhere down the street. Because Barbara is an artist, she immediately got a visual picture of the boy’s stomach flip-flopping in the road. This was amusing, and she laughed. Then, because everyone on the van experienced the same sensation, she imagined everyone’s stomach flip-flopping in the road---and she laughed harder. And she laughed uncontrollably. Her mind pictures were unbeknownst to anyone else, and because she was laughing “for no apparent reason,” she was reprimanded.

We are also quick to assume disinterest, avoidance, or incompetence when someone doesn’t respond to a request (or demand) immediately. Allowing the opportunity to process what is being asked is a luxury for us, and an exercise in control and concentration for others. How reasonable is it to expect someone to act on our command when that person is struggling to assimilate all the stimuli that is bombarding him or her? We expect it because few of us know what it is to feel our senses assaulted. We expect instantaneous trust and safety in the way that we blindly trust that the car coming toward us won’t cross the double yellow line and collide with our vehicle; or that the chef who has prepared our food hasn’t laced it with strychnine. But we must earn that trust in interacting with someone with autism. And in so doing, we can build the foundation for mutual respect.

People with autism have had to find safety and trust in that which they can control (which is often precious little). We know that many people engage in repetitive, predictable behaviors. The riddle of the spinning coin, the twisting faucet, the flicking light switch, and the opening and closing door lies in the very perseveration that causes us to seek to extinguish it. There is safety in sameness, and a comfort in what is familiar. To extinguish that which is comforting without allowing for other safe and comfortable outlets only paves the way to destruction and rebellion. Unless the perseveration becomes an obsession or compulsion that impedes an individual’s daily routine, or causes harm to one’s self or others, we must allow for it. Offering options that build on someone’s most passionate of interests leaves less time for perseveration.

When I was a little boy, my passion was (and remains) The Wizard of Oz. When I was a little boy, math was (and remains) a foreign language. I struggled most with those math problems that necessitated comprehension of counting bundles of pastel-colored dowels in sets. (To me, the bundles of dowels were the bundles of dynamite from the old Warner Bros. cartoons.) In retrospect, I suppose the concept was to count by fives, tens, and so on. But I couldn’t grasp it. And so at test time, I’d sit and count the end of each little dowel in each bundle of dynamite. Invariably, I would lose count, and have to start at the beginning, and mark each of those damn dynamite sticks with my pencil point. I would be in a panic state: sweating profusely, my stomach in knots. Ultimately time would run out, and I would fail the test. Now, if someone had noticed my struggle and followed my passion, I would have welcomed the opportunity to count yellow bricks from the yellow brick road. If my education had been personalized and individualized, my passion could have crosswalked to a multitude of learning opportunities that would have made my school career ten times more enjoyable. As such, I contended with a model of conformity that was barely tolerable. Think on the passions of the person with autism that you care most about, and consider how to build on those passions to create communication opportunities that are meaningful and interesting to that person.

We need to acknowledge that people who appear to have communicative limitations may, in fact, be intelligent and articulate. To interact with someone with autism in a manner that bespeaks anything less is condescending, and potentially damaging to the relationship. Despite all our best intentions, sometimes people figure out for themselves what is needed to get by, and how best to accommodate their needs. People have taught themselves to read (including reading upside down and sideways). Others require the support of facilitated communication or assistive technology. I have a friend with cerebral palsy whose limbs are unreliable, he requires assistance to eat and use the bathroom, he doesn’t speak, he uses a wheelchair, and he drools. If we didn’t know how very fluent he is through the liberation of assistive technology, we might be want to make assumptions about him, and his intellect.

So often the people who are in our care are forever seen as recipients. We need to ensure that reciprocation is embedded into learning opportunities. It can be both powerful, and empowering. Is the learning opportunity functional? Does it build on the person’s passion, and flow within their typical daily routines? Does it make sense? But first, is the situation conducive to learning given what we know to be true about an individual’s sensitivities? If someone with autism can’t hope to expect compassion, empathy, patience and understanding from the people who care the most, who, then, can they expect it from? How is it helpful for a stranger to command regiment and response in an artificial environment in the name of “fixing” or “curing” what someone experiences naturally, rather than supporting someone to best organize what they are challenged with processing and assimilating.

Just as we might place undue assumptions on someone who doesn’t speak, we may make similar judgements for people who can’t control their bodies. We accept the tremors of Parkinson’s disease and the tics of Tourette’s Syndrome. But what of our autistic friends whose bodies operate on a separate track from their thoughts? This is different from the aforementioned protective perseveration. Just as we should not disregard a lapse in communicative reponse, we should not justify physical inattentiveness as non-compliant or challenging. Some people simply must move their bodies in order to attend. Barbara Moran says, “It’s like scratching an itch. It doesn’t mean you enjoy the scratching; you need to do it!” Still, others have difficulty “hitting the mark,” and overshoot their target. (The child who, when Mommy says “Give me a kiss,” runs past Mommy and hits the wall instead.) Shifting from one surface to another, through a transom, or from lightness into darkness---no matter how subtle---is to face environmental stimuli that may betray one’s ability to (literally) move forward.

We must also support sensory differences in people who experience autism. We know that noise can be overwhelming: people coughing, laughing or sneezing, dogs barking, children’s shrill cries, airplanes overhead, car doors slamming, the roar of a vacuum cleaner. Unanticipated noise is assaultive and frightening. However loud, repetitive noise, music or videos controlled by the individual may be sought out, perhaps for purposes we’ve discussed. Touch can be overwhelming and intrusive, or desirable in the form of a tightly swaddled blanket or the “deep pressure” burrow of sofa cushions and mattresses. Too much light is an extreme irritant for some people, and can distort perception. Certain smells cannot be habituated so that they dissipate like the smell of an onion does after we slice into it. Foods and the combination of certain foods can trigger internal explosions of delight and angst. How many of us know people who wear sweatshirts inside out because otherwise the sensation of cloth against skin is like sandpaper? Consider the sensory overload some people experience while trying to assimilate everything around them in order to just “fit in”.

I have become close with Michael, a young boy who experiences much of what I’ve shared. He is a hero and role model. Mike is my little Pinocchio because his goal is to become a real boy (his phrase). His is an admirable and noble goal, and one that others with autism have opted not to achieve because it’s safer not to, or it is simply insurmountable. There is no handbook that tells us step by step in logical progression how to become a real boy. Mike must concentrate very hard and observe very closely exactly what it is that other little boys do, say, react to, and take pleasure in. He is not alone in his quest; he has the sensitive, respectful support of his family and friends. For Mike, an “autism program” was unbearable. He is still struggling to cope with its repercussions. We know that one size does not fit all, yet we continue to advocate for universal models that have been successful for some, even though they may not be for others.

Michael and I have developed a bond that is not readily explainable. He has flattered me by saying, “All I am is in who you have become…” and “I trust your heart like mine.” We openly ponder the virtues of altruism, its beauty, and the power of its sentiment. We reflect that altruism is so rarely obtainable, particularly when we expect it from those who say they are there to support our goals. This is part of Mike’s great struggle. Michael’s mother gives him the gift of open and honest expression, even at the risk of hurting her own feelings. And though Mike feels like a trapped tiger, forever pacing, he is patience personified in waiting for his team to coalesce. Presently, his team is fragmented into shards of glass, awaiting careful placement into Michael’s mosaic. And in his inner placidity, Michael is forgiving and accepting…and still he waits. Waits for others to make up their minds to listen to him, and act on his words. In the interim, Mike advises that it is for us to continue the fight for what is right and true. In my eyes, Mike has already shed his pine limbs to become a “real boy.”

I tell Michael that I have great expectations for his future as a visionary and advocate. His passion lies in God, and I envision him at a pulpit or lectern, shifting people’s thinking and moving them toward what is right and true and good and kind. Perhaps someday he will also initiate a movement that supports individuals with autism---not from a programmatic perspective---but from a standpoint that shows we’ve really listened. If anyone can do it, Mike can.

©2004, William Stillman
(Previously published in The Pennsylvania Journal on Positive Approaches.)

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