TheBurr.com

Story by Kelly Petryszyn // Photos courtesy of Kelly Petryszyn

It was a brisk April evening, past midnight. I perched on the top of a picnic table outside Olson Hall at Kent State University under a solid black sky. The chilly air started to make my thin, 5-foot-9 body shake. In a kind response to my discomfort, he wrapped me up in his battered Kent State hoodie and was left sitting in only a T-shirt.

Thoughts of fear, embarrassment and anger were pulsing through my head so fast that I didn’t know what to feel. In a moment of courage, I stared into his gentle brown eyes, my face moistened with tears, and demanded answers. Tell me, I insisted, tell me what I can do to help you through this. Nothing, he responded.

My heart sank.

My boyfriend, Tony, has Asperger syndrome, an autistic disorder that impairs social control. Think of him as the same as everyone else without the social filter. Often he will speak out impulsively, talk nonstop or interrupt others. These behaviors make communication frustrating and often one-sided.

People with the disorder are incredibly intelligent. Tony got a 32 on his ACT without giving it a second thought. Bill Gates, Isaac Newton and Leonardo da Vinci are all rumored to have the disorder.

Asperger is not his only struggle. Tony also was diagnosed with Attention Deficit Hyperactivity Disorder. School aides observed that he was off task 80 percent of the time.

He mentioned his disorders to me before, but I didn’t truly understand the extent of it until that April night almost one year ago.

Tony and I were playing Taboo with people from the organization we are both members of, Campus Crusade for Christ. As the timer ticked away, tensions were mounting and competition started to kick in. Everyone was excited, but Tony handled it differently.

He raised his voice so loud that it silenced about 20 people.  Then he started shaking his leg uncontrollably in anticipation. Tony got so into the game that when his partner would answer wrong, he began to hit himself with clenched fists flailing in a continuous striking motion.

I could see people around the circle stare. They were mostly looks of concern, shock and bewilderment as to why he would beat himself up over a game. In the pit of my stomach, I felt the responsibility to control him.  I wanted to reach across the circle and hold his hands down.

I never wanted to see Tony hurt himself.

Immediately, questions filled my mind. He offered answers at the picnic table, but I wanted more. I needed a friend’s ears to comprehend the course of events.

My face was soaked in tears as I curled up on the cold, hard floor of Johnson Hall at 2 a.m. that night.  I sat in a state of deep confusion as I deliberated the night’s events to my friend Nicole. I had strong feelings for him, but his issues were beyond me.  She helped me outline my options: to break up with him and let him deal with this on his own or stand by his side.

From the beginning, I knew him apart from his loud persona displayed in crowds.

I met him at a Crusade conference in Indianapolis. We were partners for a city outreach, and our mission was to deliver care boxes and the word of God to a depressed neighborhood.

We spent the afternoon inside the home of a local man, Dorian, who was already a Christian, and he ended up teaching us a few lessons about faith. I was supposed to be doing all the talking, but I became nervous.  Tony stepped in without my prompting. His words of compassion for someone he didn’t know inspired me.

My first impression of the boy I met in that quiet moment has stayed with me throughout our relationship. I noticed he was boisterous in crowds, but when we were together, he was a different version of himself. He was the one who I could stay up all night with, confessing my struggles and dreams to. My feelings started to deepen with each moment we shared.

One night, he sent me a Facebook message that asked me to tell him if he’s bothering me. He explained how he isn’t good at picking up on cues. Initially, I didn’t understand what was he was talking about, but it clicked once we returned to Kent from winter break.

At first, he would never let me speak and always interrupted me. I later discovered that people with Asperger syndrome struggle to understand language patterns. Tired of never being heard, I took his advice and told him that he needed to listen to me more. After many reminders, our conversations started to become two-sided. We still had minor communication issues, but nothing that bothered me too much.

The crusade meetings, which about 200 people attend, were a different story. Like clockwork, Tony morphed into a ball of rambunctious energy every Thursday at the start of the meeting. He always shouted during meetings. His favorite was yelling “Hi!” and waving profusely to the speaker. Sometimes, I acted on the urge to hold a finger to my mouth to signal quiet and other times I sat in silence, hoping he would stop. His hands were always producing some sort of tapping motion. And when the meeting finished, he started antics such as climbing over chairs. This behavior made me want to sit across the room.

The energy of the crowd makes him impulsive, Tony says. In the moment he is acting out, he usually doesn’t realize it. He can make a connection later, but he gets caught up easily.

Initially, I laughed it off. Then, I started hearing comments from other people, and it got under my skin.

These reactions made me nervous to introduce him to my friends because I felt a need to give a disclaimer for his behavior.  I would tell them that he is loud and chatty at first, but he is relaxed when you get to know him.

Despite the effort at a disclaimer, many of my friends, especially the ones from Crusade, didn’t understand why I was dating him. One told me, ‘You can date him, but he is just too much for me.’ Those comments hurt because he means a lot to me.

I wish they could have seen Tony pick me off the ground after I fainted from a lack of food and lay me down on the couch. He then fed me a ham sandwich while reading me the latest celebrity gossip from US Weekly. Or I wish they could have seen all the times he pulled his car up to Hilltop Drive, without my asking, waiting for me to finish working in the newsroom so I wouldn’t have to walk alone at night. I have never met anyone with a bigger heart.

Will they ever know the sweet Tony that exists under the loud exterior?

I try to put myself in his shoes, but fail. I can’t imagine what it is like to rarely be understood.

His mother, Carol, says most people thought he was a wild child growing up. When he didn’t understand the world around him, he responded with temper tantrums. She describes him during those years as her “little tornado of energy.”

His attempts at friendships failed because he wasn’t a good judge of social behaviors such as personal space and tone of voice. Tony tried to bridge the gap with his sarcastic humor, but other children found it odd, not funny.  He was never invited to birthday parties growing up. Other kids teased him.

“He could never figure the world out,” she says.

Most wrote him off immediately. He wrote a journal entry when he was 14 years old about how he wanted to be seen as “easygoing and clinically witty and sarcastic,” but instead was perceived as “an obnoxious guy who does nothing and is yelled at every other sentence.” People never seemed to connect with his personality.

“Every class was another 50 minutes of rejection,” Carol says.

It took a lot of therapy and medication for him to deal with it. He was diagnosed at age 9 and has taken many different medications since then. For the past few years, he has been taking three pills daily. Whereas interaction comes natural to most people, Tony had to go to a therapist to learn how to act in social scenarios.  Despite this help, the social exclusion left him depressed.

Tony gave into people’s opinions of him for a brief time and acted “crazy.”  He refers to this time as the “Dark Ages,” because his behavior was so disruptive that it almost got him sent to boarding school. Then, he started to learn how to control his disorder instead of it controlling him. The death of his Grandma prompted him to make this change. She had always supported him, and Tony knew she wanted more for him. He tried his best to improve. The therapies were successful, but it was really the medication that helped him gain self control. He started to act less how people expected him to and more like himself.

Over time, I have accepted that he will act out, and it will cause other people to react – sometimes in a negative manner. But no matter how comfortable I have become with this fact, I still have days when it gets to me.

One night, Tony and I went bowling with the Crusade. As the colored lights came on and the music blared, the bowling alley transformed into the scene of a club. Everyone was having a good time. Tony’s excitement level, however, peaked above everyone else’s. I started to get nervous. I didn’t want everyone to think he’s crazy. Then, he did a Russian-looking kick dance that left his body saturated in a dripping coat of sweat. It sent me over the edge. I tried calmly to tell him to stop acting crazy. Then he shouted ‘You think I’m crazy!’, which only caused more of a scene.

I felt guilty for calling him crazy — the exact word I try to convince people he is not — but I snapped under social pressure. The comments had started to circulate. A few said ‘whoa!’ or ‘settle down buddy!’  His energy and the crowd reaction was more than I could handle. I had to move a few seats away from him.

I just wanted other people to understand.

I wish they could know he behaved that way because the lights and loud music sent him into a sensory overload. Or that he continued wildly dancing long after people told him to calm down because he doesn’t pick up on social cues easily.

Tony is high-functioning and has the ability to lead a normal life. Some are not so lucky.  Asperger is a milder form of autism, a spectrum disorder characterized by neurological dysfunction that effects communication and social interaction skills. Autistic people vary from high to low functioning, some with severe cases. According to the Centers for Disease Control and Prevention, 1 in 110 children have an autism spectrum disorder.

After that night, I realized I need to stop having nervous attacks every time people react to Tony’s behavior. I love him deeply and I know that when he loses control, it is his disorder coming to surface — not him. He has accepted it, so I should too.

Carol says it took her time to let it go. When she found out he was diagnosed with Asperger syndrome, she vomited in the bathroom on her way out of the doctor’s office. Then, she moved on. Before his diagnosis, she spent a long time living with frustration and guilt. She eventually learned empathy and set aside her emotions to do everything possible to help him. Her efforts, along with others’ and Tony’s gradual awareness, gave him the chance to transition into the person he always has been.

“He’s sweet,” Carol says. “He’s wonderful. Not everyone knows it, but that’s OK.”

It’s their loss.

But no matter how charming he can be, Tony always will stand out among a crowd. His voice always will carry across the room. He always will talk out of turn. But it’s OK.

Tony’s karate teacher, Sensei Heidi Gauntner, once described him as a “breath of fresh air.” That is how I perceive him. He is different from other people, but it draws me in. His unique qualities keep our relationship unlike any other.  And I’m more than certain I will never encounter another person like him.

After that April night, Tony wrote me a Facebook message apologizing for his behavior. “Seeing those tears was like a vice around my heart,” he wrote. He was sorry that he let himself get out of hand. He vowed he would try to be better for the both of us.

While he deals with his disorder, I have to be honest with myself and realize it will take time to get past what people think. I will probably snap again like I did during bowling, but those incidents can never outweigh the person he truly is.

I don’t think of Tony as having Asperger syndrome. I think of him as Tony – the funny, compassionate guy I care deeply about.

I continuously hear his family friends and relatives say it’s a shame more people don’t appreciate him. My heart sinks when I hear this because I know the world is missing out.

To me, Tony is the best-kept secret I will ever uncover. And now, that secret is out.

Kelly Petryszyn is a junior magazine journalism major and a contributing writer for TheBurr.com.