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Connecting with a Larger Community

I paddled him out, keeping him on the nose of the board. I started to talk to him about surfing, and then he gets into this whole thing about pirates. Pirates, pirates, pirates . . . he knew all kinds of things about pirates. Pirates of the Caribbean, treasure chests . . . that was his one thing. Pirates.

 

I sat behind him on the board. When a wave rose up to where you paddle for it, he didn’t even try to stand up, or push up his arms. He didn’t move. When the next wave came, I grabbed him by his shirt and jerked him to his feet, so he could feel what it was like to ride a wave. Then we fell off the board and the board hit me in the face.

 

We tried a couple more before paddling in. The kid was stoked. He was really happy when his parents came up. I was happy too.

 

The setup reminded Clay of a hundred contests he surfed as a kid. Tents, sponsor signs, and a small scaffold sat on Malibu Surfrider Beach, the epicenter of California’s surfing culture in the 1950s and 1960s. The array looked like a hybrid of summer camp and a surf competition. The contest director, Israel Paskowitz, organized parents and volunteers while their kids scrambled in all directions.

The kids weren’t at Malibu for a surfing competition, however. These were first-time surf sessions. They weren’t routine paddle-outs either. The participants were autistic.

Clay showed up in Malibu at the invitation of Paskowitz and Surfers Healing, an organization formed in 1998 to provide the surfing experience to kids with autism and other social disorders and developmental disabilities. “Through the transformative experience of surfing, Surfers Healing attains greater mainstream acceptance for both the families of and the kids living with autism,” the Surfers Healing website states. “People seem to have a lot of pre-conceived ideas about what kids with autism can or can’t do. We’re here to change those notions forever. Surfers Healing has spent the last fifteen years taking children with autism surfing. Our goal is to help foster the understanding and acceptance of autism.”

The creator of Surfers Healing, Paskowitz is a member of California’s “First Family of Surfing.” Their story is one of the more eccentric in a culture filled with eccentricities. Paskowitz grew up on San Onofre State Beach, one of nine kids of Dorian and Juliette Paskowitz. Dorian, a physician, and Juliette chose to raise their family through surfing and the beach lifestyle, so they moved the entire clan into camper vans while Juliette home-schooled them. They crisscrossed the country in search of waves—the ultimate road trip for any school-age surfer. Clay found Paskowitz’s past endearing and enviable. Furthermore, Paskowitz was one of three brothers who surfed longboards professionally for several seasons.

In 2008, while filming Just Add Water, Clay and Klevin headed to Malibu for the Surfers Healing camp. Hundreds of kids skittered about the beach, which immediately made Clay anxious. However, he’d promised Paskowitz he’d be there, and he wanted to see what it was like to assist children in far more challenging positions on the autism spectrum than himself.

“They figured that since I was a pro surfer, just diagnosed with Asperger’s, I would be a good person to help,” he says. “At first, I didn’t want to do it. Me, helping little kids? No way. I didn’t know how to show a kid who couldn’t swim and had no coordination how to surf. One of the things that’s really hard for me is to be patient with other people. I always try to get better at it, but it’s hard. This was hard.”

Soon enough, Clay received his assignment: a moderately autistic little boy. Given Clay’s penchant for quietness and the boy’s difficulty in speaking, the prospects were strong for a silent fifteen-minute session that would feel like an hour. Clay pulled his hair and fidgeted, unsure of how to proceed with the kid.

What happened next was magical and revealing for instructor and participant. “I paddled him out, keeping him on the nose of the board,” Clay explains. “I started to talk to him about surfing, and then he gets into this whole thing about pirates. Pirates, pirates, pirates . . . he knew all kinds of things about pirates. Pirates of the Caribbean, treasure chests . . . that was his one thing. Pirates.

“I sat behind him on the board. When a wave rose up to where you paddle for it, he didn’t even try to stand up, or push up his arms. He didn’t move. When the next wave came, I grabbed him by his shirt and jerked him to his feet, so he could feel what it was like to ride a wave. Then we fell off the board and the board hit me in the face.

“We tried a couple more before paddling in. The kid was stoked. He was really happy when his parents came up. I was happy too.”

After Clay talked to the parents, he wiggled out of his wetsuit, toweled off, changed into his board shorts, and grabbed his cell phone. The first person he called was Jill, who had prodded him into driving to Malibu after he conveyed his typical apprehensions about trying something new that involved people he didn’t know.

“Mom, I did it! I surfed with the kid on my board!” he exclaimed. “The kid is cool. He’s into pirates.”

“I could feel his smile beaming over the phone,” Jill later said. “He was really happy to help out that kid. I think it opened his eyes to how he could use his position in the surfing world, and his own experience with Asperger’s, to connect with these kids.”

“I don’t see that happening so much with other Asperger’s kids, to go someplace and not be there for themselves,” Carolyn Jackson says. “Most of what these people do is for themselves. He has worked with kids and for kids, and he has not rejected that, even though his facial expressions might say, ‘Whoa, I’m so un-gung-ho for this.’ I saw some videos of him with the kid in Malibu, and he just picked up this kid by the shirt, and the kid is stunned, and then his arms are flailing. But instinctually, Clay knew this is what he had to do to get the kid up to ride a wave.”

Clay never envisioned his surfing career taking a broad side turn into the world of charity events, promoting toys specifically ­designed for kids with special needs and being the spokesman for a cause, but all of that changed after the Just Add Water documentary broke worldwide. Suddenly, parents and educators throughout the world were sending letters to the Marzos and to Varnes about their kids, their neighbors’ kids, or the siblings of their students who lived with Asperger’s syndrome or full-blown autism. They thanked Clay for demonstrating that people on the spectrum could not only become good enough at something in life but also excel at it. While normally wired people make choices from many life, career, sports, or entertainment options, those on the spectrum rarely have an array of choices. Wrote one new fan:

 

My awesome loving son Brian Heins has Autism. He is age 11. Brian’s birthday just passed last week. I wanted to do something very special for him for his birthday but unfortunately this great idea just popped into my head tonight. I want to create a wall in my home dedicated to Autism Awareness and on this wall I want to hang the pictures of the most powerful and influential people in our society today affiliated with Autism.

I was hoping you could find a moment in your heart to send a picture of yourself with a special written note on that picture dedicated to my son Brian Heins. I wanted a note that was positive and inspirational. My goal is to fill an entire wall, the biggest wall in my home with pictures of influential and powerful people that are affiliated with Autism. I am going to put my son Brian’s picture in the middle of the wall with your pictures surrounding his picture, the idea is to show support and love for Autism but specifically in this case for my special baby Brian Heins.

I am thinking of naming the wall Brian’s Heroes . . . When Brian looks at this wall, he will see the Moms and Dads that love and care for their children and were kind enough to care for him, just regular people just like Brian . . . the other view will be the most important, because it will be by my extended family and friends that truly don’t understand Autism but see the faces of very popular people but when they read the personal notes. It will weigh heavy on their hearts, the special bond that Autism creates. Hopefully spreading awareness further and further and enlightening more and more people.

Respectfully Submitted,

Christopher and Michelle Heins

Manahawkin, NJ

 

Clay sent Brian a personal note and a handful of pictures. He later learned that the boy put them up on his wall and became an ardent follower on Clay’s busy YouTube channel and website.

“We have had so many wonderful letters, from parents, brothers, and sisters, even different autism organizations,” Jill says. “Every one of them starts with basically the same thing, something about their loved one and how Clay has inspired them with his surfing and his ability to get out there and show people you can be wired differently and still excel, still make a difference in the world.

“One of the surprising subjects in these letters is athletics. You never heard people say that sports was one of the focuses of autistic kids. Most are uncoordinated. But now with Clay . . . he can skate, he shoots baskets well, and he’s good at tennis. He used to be a good pitcher too. He’s a natural athlete. You’re starting to see it more as Asperger’s kids come out of the woodwork. One’s a good long-distance runner; another’s obsessed with trail biking—he knows every trail, every bump on the trail. We get letters from parents, all these parents, who share these stories with us.”

 

Dear Clay:

I just learned about you today, from a friend who lives in Maui and who is visiting New York. She knows about my Asperger Profile (object to use of term “Syndrome”) and told me about yours.

You are fortunate to have found out about this at such a young age, and to have parents who are not afraid to seek out a “diagnosis,” when they see unusual characteristics in a child.

I only found out a few years ago, and only on the suggestion of a friend of our family . . . glad to know I was not alone and it was o.k. to be “different.” [I’ve made] two films, have you seen them? Adam and Temple. They “got it right” (in my opinion).

I am glad you found something to do that you love so much, like surfing, which helps you with this. I found “acting” (object to use of term “acting,” as I have no concept of “pretending”).

“Acting” is a therapeutic pathway that helps relieve the chronic stress, anxiety, depression and anger associated with Autism and Asperger’s Profile. I use bodybuilding and gymnastics in the same way, to “get out of your head,” as a friend at the DBSA meetings in White Plains, New York, which I started attending in November, 2008, told me.

I have often thought of learning to surf, but cannot overcome my fear of what I cannot see (sharks). I don’t mind the sharks, as long as I can SEE them. (I have gone scuba diving, and hope to do so again, when I can afford it, and will be in a place where it is available, and have no fear of this at all. As long as I can SEE what is around me.)

Well, best wishes to both of you. Liked your comment “toys from God.” Agree.

Lowell Joseph Gallin

 

The continuing stream of letters from admiring parents and others and Clay’s expanding profile in the ever-growing autism community have opened new channels for him to reach others on the spectrum. Suddenly, the man who eschews social contact is finding a new sense of enjoyment from a very unlikely source—the personal appearances he grew to dislike at surf contests. He’s been asked by a number of organizations to make appearances, among them the Scott Center for Autism Treatment, operated by the Florida Tech School of Psychology, and Autism Speaks, the world’s leading autism science and advocacy organization. In 2014 the marketing company for Autism Speaks contacted Varnes about Clay’s availability to sit on the “Not So Bored of Directors” of Little Tikes, an organization that builds a series of toys and playgrounds nationwide to accommodate the socially and developmentally disabled. “Specifically,” the invitation stated, “we are interested in having people like you who can offer advice in the areas of cognitive developmental benefits, the current playground systems, as well as on the up and coming products. The ultimate intent is to use experts such as yourself in the development of Little Tikes products and we would proudly tout our partnership with you.”

During their consideration process, Little Tikes officials sent Clay a questionnaire. They queried him about his life, passion for surfing, and how he could extend himself to children through a seat on the board. His answers cast a revealing light on the way he views himself as he moves forward.

“I think kids should get outside and find their own passion,” he said. “’Cause inside the house . . . no good’s gonna come out of that. I think a playground company is interested in me because I’m a creator and not a follower like most people. So they’d definitely be into what I think because it’s totally different. I think outside the box. I don’t think inside the box. I also think getting several different opinions is a good idea, because you get more options of what to think about and what’s different out there. You get to choose what’s different and what’s cool, and not so generic.”

The next question tripped up Clay: “Do you consider yourself a role model for kids?”

This is a slippery slope for any professional athlete who, whether he or she likes it or not, is perceived by children and teens as a role model. Some embrace the idea and relish the opportunity to have a positive influence on kids; others shy away from it, or simply ignore the notion. Clay started out as the latter, no doubt handcuffed by his social difficulties, but he is now slowly embracing a phase of life in which he continues to inspire by example.

“In surfing, I think I’m a role model for other kids. And yeah, also with what I do, I do my own thing and some kids might like that,” he said. “I don’t really do much; I just surf permanently all day, every day. I think kids definitely look up to me because they trip out on how much I surf and how good I am at it.”

If that was the most satisfying answer to the Little Tikes team, one other comment was certainly the most curious. When Clay was asked, “Do you think playgrounds should be built for all types of kids to use?” he responded, “No, I don’t think they should because there are too many different types of kids these days.”

“Leave it to Clay to come up with that one,” Varnes says with a hearty laugh.

When Clay started connecting with families and those on the spectrum, one person in Maui flashed a knowing smile. Thinking back on how Clay touched her teaching career, Mary Anna Waldrop Enriquez expresses no surprise whatsoever at this new life direction.

“The consciousness and awareness of autism and Asperger’s has exploded in the last ten years,” she says. “I’ve learned so much about autism. I saw who Clay was, and I remember him so well. I can pinpoint a lot of learning differences and challenges in kids like that, because I remember that look of Clay’s, that long stare where it just isn’t clicking. It’s not a question of intelligence, because he’s highly intelligent; it’s a question of how he’s wired, how he accesses and processes.

“Since him, we’ve had quite a few kids, which is to be expected. Recently, we had a parent thinking of moving here, was offered a good position, but his child has autism. His dad told us he’s highly functioning. To take this job, he wanted to make sure we had a quality education for his son, from fourth grade through high school. One of the things I told my principal after we met with the mother, father, and boy, was, ‘Susan, for Clay, we have to take this boy.’

“I had Clay for one year, and I only had him for forty minutes a day. Still, every single day I walk into the classroom I feel Clay is with me. I’ve got to do it right for every other student that comes. He’s made a huge impact in my consciousness about children who learn differently.”

Enriquez and Jackson agree that the dynamics have changed drastically, thanks to the exploding awareness of autism and Asperger’s. The Clay Marzos of the world now have a platform and an opportunity to share their lives in a motivational, inspirational way. This awareness has been fueled by the work of people such as Dr. Tony Attwood and autistic scientist-author Temple Grandin, as well as by recent revelations that everyone from Albert Einstein to British ­singing phenom Susan Boyle to Apple creative firebrand Steve Jobs are probably Aspies.

In thinking about Clay’s opportunity to take his message to the world, Jackson asks, “In the bigger picture, are we going to look at Clay as too far outside the loop? Or are we going to look at ourselves and say, are we too far outside the loop? When we’re looking at a society where one out of eighty-eight kids is or will be diagnosed on the spectrum, that becomes a very good question.”

Clay has certainly noticed the difference. “Not as many people look at me differently,” he says. “Now it’s just like, ‘That’s Clay, that’s the way the dude rolls.’ [Previously], everyone tried to tell me what was wrong with me or that I would never be anything except a stoned surfer. I’m just happy that more people see that I’m not a freak or this weird dude. I have a gift and I see things differently, and I like to surf and watch videos and hang out with my girl just like any other guy. It’s also really cool that a lot of people say I have helped them with their lives in some way. I like that.”