Grappling with Autism

Photos by Christopher E. Long and Mason Monsevais

It's not easy being a warrior. Sacrifices must be made. Tithings must be collected in the form of blood, sweat, and tears. Desmond "Desi" Parker Conley knows this to be true. On the night before the Kids International Jiu-Jitsu IBJJF Championship at the University of California, Irvine, that pound of flesh was paid when his mother made him go to bed before the Jose Aldo and Conor McGregor fight aired. But unlike how I imagine many 11-year-olds would react, Desi said his goodnights and weakly waved farewell as he climbed the staircase to his room. He's a warrior, and sometimes even warriors must heed their mothers and shuffle off to bed before the main event. In hindsight, a goodnight sleep must certainly outweigh the 13-second fight.

The doors of the Art of Jiu-Jitsu, "AOJ," opened in Costa Mesa, California in the summer of 2012. With bright sunlight shining through the glass, one must squint to deflect the glare from the all-white everything. Students garbed in white gis drilled and sparred under the watchful eyes of champion brothers Guilherme and Rafael Mendes and their legion of coaching disciples.

In the infancy of AOJ, Desi—then only 8—was in third grade and at a total loss as to how to deal with a bully at school. His parents thought it best if he knew how to defend himself. On this day, his father, Jeff Conley, and his step-father, Johnny Castanha, were at his side. The young boy was fitted for his white gi, which fit perfectly with just a little extra room for him to grow into. Both adults fumbled with tying the belt, but they finally managed just as Coach Rick Slomba called for all the students to line up on the mat. The class was small, and it was amazing that the 8- to 12-year-olds still couldn't manage to line up evenly. They bowed to their coach and began jogging around the mat.

"Desi was stiff. His motor skills were low," Slomba said. "He struggled to do what the other kids could."

There is a rule at AOJ that prevents parents from coaching their children from the sidelines. The coaches, all accomplished jiu jitsu practitioners, are there to coach. But Conley and Castanha ignored that edict, instructing Desi to calm down, listen up, quit crying, pay attention.

"In the beginning it was rough," Conley said. "We knew that we weren't supposed to talk to Desi as he was training, but Johnny and I had to just to get him to calm down. I don't think any of the coaches had any experience working with children with autism."

Many tears are shed at jiu jitsu tournaments, some by children and some by parents. The tension at these competitions is almost palpable. Schools' reputations hang in the balance. The financial repercussions are enormous, not just for jiu jitsu schools, but also for families that have had to make sacrifices in order for their children to be able to compete at these event. People fly in from around the globe for children to compete. A lot is at stake.

Parents and coaches frantically try to register the children. People crowd around the monitors, eagerly seeking the names of the competitors and which mat they're assigned to fight. It doesn't help matters that the announcer's voice blares over the PA system: "This is the last call for Oscar Demarco. Come to Mat 2 or you will be disqualified!" A few minutes later, the announcer blares: "Oscar Demarco is disqualified!" The flurry of activity after this public notification of a disqualification resembles the activity of ants after their anthill has been disturbed. Adults and children all scurry around trying to find where they're supposed to be in order to avoid the same fate.

Before competitors can enter the mat area, a man measures the sleeves and pants of their gis to make sure that they met league guidelines. As Johnny and Desi waits in this line, Johnny glances down and notices that Desi's pants are pulled up high. He leans over and says: "Desi, pull your pants down."

"But I like them up high," he says.

"Just do it until you pass through the gate," Johnny says. "You can pull them up on the other side."

Desi did as he's told then leans against the yellow barrier and watches some of the matches already underway. The PA system blares, eliciting grimaces from nearby parents and children. Except Desi, who seems to be in a world all his own as he studies the other competitors sparring.

Just before Desi's second birthday, he was diagnosed with autism, which is one of a group of disorders known as autism spectrum disorders. This developmental disability can cause impairments of social interaction. "Desi just couldn't interact with other children," said Nikki Castanha, Desi's mother. "If I took him to the park, he'd always be off by himself." For a time, the best she could hope for was getting her son to engage in 'parallel play,' which is having the child play alongside other children, perhaps even using the same or similar toys as those around them. Desi was encouraged to imitate the other children's play while he's playing on his own. His mother would watch as the other children would play together with toy cars, rolling them along the ground as they simulated races and crashes; but not her son, who always played alone, perfectly content to get lost in just spinning the tires on his toy car. Round and round. Round and round.

Desi also had problems with body awareness, balance, and motor control. "His physical therapist's goal for him was just to be able to walk a straight line," Nikki said.

As the years went by and Desi made huge strides in his social and physical development, he was enrolled on a special needs soccer team. "He couldn't grasp the concept of being part of a team," Jeff said. "He didn't like it."

Nikki added: "I never thought my son would be able to interact normally with typical kids."

Johnny had been studying jiu jitsu for two months when he suggested that Desi should try it. "My first reaction was: jiu jitsu?" Nikki said. "No way! My son will be like the ball in soccer—they'll kick him." But she finally acquiesced, and her son began to train. She found it unbearable to watch as the more experienced children would use her son as a 'practice dummy.' He was repeatedly dominated by more experienced students. But watching him struggle, Desi's parents did so with the understanding that their son was at more of a disadvantage than just being new to the sport.

"We'd repeatedly tell him that if someone was hurting him, he should tap as soon as possible," Johnny said.

There were tears and yelling. He'd pound the mat and yell: "Come on!" He'd get angry at his training partners and grab them roughly. "But there wasn't malice behind his actions," said Professor Rick Slomba. "He just wanted this so badly. It was like he was getting mad at his body for not doing what he wanted."

Desi's match is on Mat 9. I walk alongside him and ask: "How do you feel?"

"Good," he says. "I'm a little nervous."

Two of Desi's fellow AOJ students approach and the kids greet each other. A boy pats Desi on the back and tells him "Good luck." Desi asks the pair if they'd fought yet, and the boys shake their heads no.

"The best part for me is seeing him interact with other kids," Jeff said. "He's always had a hard time relating to other kids. He can now relate through jiu jitsu. It's brought him out of his shell."

Today, Desi will fight only once, and we learn that it will be against a boy from Brazil—the birthplace of modern jiu jitsu. Johnny talks to the boy's father and learns that the family flew in specifically to participate in this competition. Johnny tells me this, motions to the other boy, grimaces and says, "Great."

Desi and the Brazilian boy greet each other as they wait for the referee to instruct them to move to the center of the mat. The boys chat with one other. Desi says something that makes the Brazilian boy smile. "Desi handles this way better than the rest of us," Johnny says, shifting his weight from foot to foot.

The referee motions for the two boys to come onto the mat.

It took time for Slomba to get Desi to control his outbursts. "At first I'd say: 'Desi, focus on your breathing.' A few months later all I had to say was: 'Desi, breathe.' And it wasn't too long until all I had to say was: 'Desi.'"

"We've all experienced this. We've all pounded mats and yelled: Come on!" Slomba said. "But you have to learn to control your emotions. It's a weird environment; you're fighting with people, but you have to learn that you can be aggressive without being mad."

Johnny, Jeff, and Nikki would constantly remind their son to tap if someone was hurting him. But then something amazing happened. They had to make sure he'd stop performing a technique if someone tapped to him. Desi wasn't a practice dummy anymore.

"When he was finally at peace was the turning point," Slomba said. "His techniques improved and he came alive."

The two boys meet in the middle of the mat. They shake hands with the referee, and then with each other, and square off.

The competition begins.

They grip and jockey for position. Desi pulls guard, but can't secure it. No points are awarded for the takedown. What follows is a flurry of motion, like cats fighting, and it isn't at all clear who has the advantage. Both boys jump to their feet, resetting, but Desi's opponent manages a sweep and is awarded two points.

On the ground, Desi manages to escape and get the boy in the closed guard. The boy from Brazil fights to escape, planting his arms on the ground for support. In a blink of an eye, Desi secures a Kimura, a shoulder lock. He extends the arm far up the back of his opponent. The referee, sensing a submission, hunkers over the two combatants, his hands poised to pull them apart to prevent Desi from injuring the other child. As the clock ticks down, Desi's parents shout encouragement for him to finish the submission. The Brazilian father does the same for his son.

There's only 10 seconds left.

"You can do it!" Johnny shouts.

Desi applies more pressure, but before he can secure the tap, the clock winds down. The referee calls the fight.

Desi untangles himself from his opponent and stands up. He adjusts his gi and ties his grey belt. The referee lifts his opponent's hand in the air, proclaiming him the victor by two points. There's no emotion on Desi's face. If it weren't for the venue, you'd think he just finished a sparring session at AOJ. Guilherme Mendes stands behind the yellow barrier and motions to Desi. Leaning forward, Mendes drapes a gentle arm around his student's shoulder and speaks softly to him, the sound of his voice lost in the cacophony of noise in the arena. Whatever was said garners the slightest of smiles on Desi's face. He nods his head to his professor, a look of determination appearing for the briefest of moments, almost like an object that rises up through water, becoming almost visible, before settling back beneath the surface.

His mother leans across the barrier and hugs her son. "I am so proud of you," she says.

The boy from Brazil comes over and tells Johnny that Desi is strong and the fight was close. On the podium, the boy reaches down from the first place stand and lifts Desi's arm high into the air. They're both winners.

"When Desi is on the mat, he isn't a boy with autism," Nikki says. "He's just a boy."

Three days after the tournament, I'm chatting with Rick Slomba after a coaching session at AOJ. "You can see Desi trying to solve this problem of jiu jitsu. You can see him working it out in his head. There is no doubt in my mind that he'll solve it and become a black belt world champion. Absolutely no doubt. He just wants to succeed too much for him to fail."

Johnny explained that everyone who trains in jiu jitsu goes through periods of feeling like they're not improving—the 'plateaus.' "Desi is the only one I know who doesn't complain about the plateaus. There's no quitting in him."

Desi is currently training for his next competition with the aspiration of winning gold. It's not certain this goal will be achieved. It's only certain that he won't stop working toward it—well, that and the certainty that the night before the tournament, his mother will make sure he gets a goodnight sleep.