Autism Redefined

We are honored to have an awesome  guest blogger  today! Samuel Moore-Sobel   You can check out his bio at the end of the blog. As always thanks for reading our blog!

 

Autism Redefined

“I want to have a girlfriend, but I don’t know if I can handle it.” 

Stunned, I turn to look at the teenage boy sitting beside me. Even though I have been asking him (let’s call him Dan) all night what was bothering him, he chooses to tell me this bit of news while we are passengers on a bus filled with teenagers, hurtling towards our intended destination. I, acting as one of the chaperones for this summer camp filled with countless adventures, have just spent the last several minutes attempting to ascertain the reason behind Dan’s distressed demeanor. Despite my repeated questions, he refused to utter even one word, choosing instead to continue sulking. His initial refusal to speak gave me cause for concern. Until his unexpected admission left me speechless. 

I have spent much of the past week making feeble attempts to engage Dan in conversation. He remains quiet much of the trip, keeping to himself even when he is standing by my side. I lob dozens of questions his direction throughout the week. Questions about school, his family, even his favorite video games. His response is nearly always the same – typically offering little more than a one-word answer. 

Dan was one of the deciding factors in my decision to spend a week serving as a chaperone for this summer camp. At first, Dan appeared reticent about attending. He acted as if he possessed a strong desire to go, but still retained worries over how the trip might unfold. He never said so, but I suspected his nervousness had something to do with the fact that he had never been away from home. Until he found a way to convince me to come along; which admittedly, didn’t take much convincing. 

“Don’t let him take 45 minute showers,” his mother tells me moments before our trip is to commence. She is nervous, really nervous, the kind of nervous only a mother gets when she fears for her child. Unsure of how he is going to react, she keeps shouting instructions even as we depart to board the bus. Playfully, she promises to send daily texts to check on Dan. Her sense of humor has hardly changed since we first met several years before. She was the first person to ever offer me a job, hiring me as a sixteen-year-old to be a counselor at a camp dedicated to serving children with special needs. My experience in this area allowing me to remain largely undaunted by the trip ahead.

For the most part, Dan loved camp. He spent plenty of time at the beach, his feet causing sand to fly high in the air as he ran towards the water. His tall frame helped him stand firm against the waves. Dan strikes an impressive figure at fifteen – broad-shouldered with dark skin, his athletic build gives off the distinct impression that he is ready to run at a moment’s notice. A young man with a curious nature, one look into his eyes reveals a desire to take on the world.

A random bystander would likely be unable to detect any evidence that Dan has autism, except for the nervousness he displays throughout the day.

“What time is dinner?”

“What time do I take my medication?’

I give the same response calmly each time he asks me these  questions, knowing full well the queries will be repeated within the hour. He keeps asking, as if the answer I just gave might change if the question is posed once again. I do not mind the incessant questions. After all, I like to ask a lot of questions, too.

The week unfolds nearly as designed, although a few speed bumps are encountered along the way. He becomes rather uncomfortable over the level of noise generated during certain activities. He shows me his discomfort by bringing his hands up to his ears while letting out a few loud noises of his own. This sign propels me to formulate an action plan, typically comprised of plotting a joint escape. We learn to adapt quickly to this new environment. For example, when students gather in the large hall each night for instruction, we nearly always sit outside the doors. Others advise me to force him to attend. I resolve to allow Dan some level of control over his surroundings, eager to grant him the space to make his own decisions. 

Hence why I allow him the time and space to process whatever it is that is bothering him during that bus ride which has never left my memory. After asking a few questions, I resolve to let him be. Within the blink of an eye, his mood changes. Finally ready to talk after what seems like an eternity, his thoughts and feelings come gushing out like an unexpected avalanche.

                “I like Judy,” he tells me quietly. “I just found out she has a boyfriend.” He proceeds to tell me how much he likes this girl, diving into a long list comprised of the typical qualities teenage boys find attractive about members of the opposite sex. His eyes light up as he talks, brimming with palpable excitement. 

                “Her boyfriend is better looking than me, though,” he tells me. “And, you know, I have autism.”

               Shocked, I quickly avert my eyes. Within a few seconds, I glance back towards him as casually as possible, making an ill-fated attempt to hide my internal struggle to piece together a suitable response. In the more than seven years I have known Dan, he has never offered any indication that he is aware of his diagnosis.

Before I can say a word, he picks up where he left off, articulating his desire to live a normal life. He expresses concern over whether or not he will be able to do his own laundry, or even one day own a home. He worries greatly over what his future holds. Yet most of all, he worries if he will ever find a girl to love.

                “Do you think I will ever get a girlfriend?”

                I pause for a few seconds, glancing around to see if anyone is listening to our conversation. Is there anyone else who can provide an adequate answer to this nearly impossible question? 

            I ponder the implications of the question at hand. Ultimately, no one is fully able to predict the future. Finding someone to love is far from a guarantee for any of us, no matter our socio-economic background, upbringing, physical or emotional makeup. Besides, does autism automatically preclude someone from building a life with a romantic partner?

           “It’s hard out there, even if you do not have autism,” I tell him.  

He asks if I have a girlfriend. “No,” I say, offering a few words concerning my own experience. How I failed to go on a first date before reaching my early twenties; and, how that one, along with each subsequent relationship, proved to be incredibly painful before reaching a predictable end. I tell him how the past makes me feel as if the prospect of ever finding someone to share my life with seemingly slips through my fingers ever more rapidly with each passing day.

I then revisit a story I assume his mother told him long ago. I point to the red facial scars under my nose, chin and across my neck. I tell him how I suffered second and third degree burns when I was his age, as I helped move boxes and furniture for a nearby resident; and, how ever since, a day has not gone by during which I wonder if I will ever find a girl who loves me – scars and all.

                “Wow! I always wondered about your scars! I just never asked…” he says, his voice trailing off as he turns back towards the window. His eyes remain trained on the landscape as the bus drives on, taking us farther into the night. I smile as I watch him, looking for signs of emotional turmoil. He seems calm now, as if my explanation has eased his mind.

            Years before, his mother had expressed a great deal of empathy after hearing my story. She argued it was easier for her son, since he was “expected” to be different. Yet the reality is that I can no more fully understand what it is like to have autism, just like those lacking personal experience with burn injuries cannot fully understand what it is like to suffer burns. Human nature is to compare suffering; but instead, we can choose to use our scars to empathize with those around us. 

For we all have scars, both physical and emotional. We all have things we would like to change about ourselves, alterations that would seemingly improve our chances of living out the future we envision. We can use our past experiences as a way to connect, through empathy and compassion, with the similarities in the ways our deep-seated worries coalesce with those held by fellow travelers.

I close my eyes to catch a few moments of rest. I immediately question whether I proffered the right response. Should I have assured him everything would be ok? Or made clear that his diagnosis did not preclude him from finding the girl of his dreams? Should I have affirmed his inner strength, the growth he has shown just in going on this trip? While I couldn’t guarantee my young friend that life would work out exactly the way he planned, I knew deep down that he is more than strong enough to handle whatever comes his way.

Before I can offer any of these sentiments, my eyes quickly open the moment another question hits my ear.

“What time will we get back?” 

    Samuel Moore-Sobel serves an internship in a congressional office on Capitol Hill in Washington DC. Photo by Alexis Glenn/Creative Services/George Mason University

Samuel Moore-Sobel is a security program manager and freelance writer. He is nearing publication of a memoir focusing on his experiences revolving around both trauma and recovery. He writes a column for the Blue Ridge Leader and has written numerous guest blog posts concerning his experience as a burn survivor. His work has been featured in Burn Support MagazineLoudoun NowRoanoke Star, and Mental Health Talk, among several other publications. Visit his website and blog, www.holdingontohopetoday.com. Follow him on FacebookTwitter, and Instagram @holdingontohopetoday.

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