Kolzig has been active in the autism community since learning of his son's diagnosis.

NHLers band together
to fight autism
By Russell Levine | NHL.com
March 31, 2006

Olaf Kolzig is rarely unsure of himself on a hockey rink. The Washington Capitals' all-time leader in wins and shutouts, Kolzig has played in the Stanley Cup Finals, NHL All-Star Games and the Winter Olympics. Put him in front of a six-foot by four-foot net on a 200-foot sheet of ice, and he knows exactly what to do, no matter the situation.

That's what made it so unfamiliar for Kolzig when he and his wife Christin learned that their then 15-month-old son, Carson, had been diagnosed with pervasive developmental disorder, which is on the broad spectrum of autism disorders.

"When you get the diagnosis, you're in shock," Kolzig said. "But as soon as you try to figure out what to do next, that's when the nightmare really starts."

That's because so little is understood about autism, despite an explosion in new diagnoses that has pushed the frequency as high as one in every 166 children.

"When people find out they have cancer they know where to go and what to do," Kolzig said. "It's not the same thing, obviously, but this is such a baffling disorder, and there's no blueprint where to turn."

The Kolzigs searched for specialists all over the Washington area and in their off-season community in Washington State, in search of the best care for Carson. A rigid program of therapy soon began, and Carson, now five, has made remarkable progress. He attends preschool five days a week, with the aid of a shadow, and is verbal and affectionate with his parents.

It was the lack of outward affection that first alarmed the Kolzigs back when Carson was a baby. Olie would return from lengthy road trips only to find that Carson showed no reaction to his father's presence.

Autism is a neurological disorder that affects the development of social and communication skills. It can affect their ability to interact with others, make friends, and develop. People with autism fall into a wide spectrum, from those that will remain non-verbal and require assistance their entire lives to those who display only mild social awkwardness. Others have behavioral issues as they struggle to deal with sensory overload.

When a parent receives a diagnosis of autism, they can feel all alone. But as Kolzig soon discovered, he didn't have to look far within the NHL community to find other parents going through the same thing. One of the first he talked to was Scott Mellanby of the Atlanta Thrashers, whose son Carter, was diagnosed nearly eight years ago.

"When we got the diagnosis, Stu Barnes put me in contact with the Mellanbys," says Kolzig. "I knew Scotty a little bit. Like so many people, when you heard autism at that time, it was something foreign."

"I remember my conversation with Olie," Mellanby says. "I had already been through it for three or four years. I told Olie the truth, 'you're in for a rough ride.'

Mellanby has always been active in the community of the cities in which he has played.

"You're hoping somebody will tell you something miraculous," says Mellanby of receiving the diagnosis. "You think, 'OK, intensive therapy for a few years, he'll be fine."

Unfortunately, that has not been the case for Mellanby. Carter is largely non-verbal as he approaches his 10th birthday.

"We haven't found that breakthrough," says Mellanby. "Certainly, treatment has improved. People used to hear 'autism' and automatically think Rain Man. That's not the case. Savant-type abilities are very rare. Nowadays, people get it a lot more. Unfortunately, it's so prevalent now."

Just as Kolzig had reached out to Mellanby, he soon found himself doing the same for another fellow NHLer, and one of his best friends. Byron Dafoe and Kolzig were former teammates in Washington, served as the best man at each other's weddings, and are even Godparents to each other's kids.

"Byron always suspected something was wrong with his son," says Kolzig, echoing a common refrain from parents who later receive the diagnosis. "Because we had already been through it, we were able to give Byron some guidelines and they were able to get the diagnosis."

"I was playing in Boston. (My teammate) Jason Allison had a son about the same age," says Dafoe of his son, Eric, born in January, 2000. "We kind of had our kids growing up together. At about 18 months of age, there was a huge difference in their vocabulary and how outgoing they were. (Eric) was withdrawn, not talking much and kind of in his own world.

Kolzig's Capitals mask features the names of his three children, as well as the Autism Awareness ribbon.

"I'd never heard of autism. Our pediatrician wanted to wait, but my wife kind of took things into our own hands, and we got the diagnosis that he is on the autism spectrum. That was a tough time for us, because we didn't know what to expect."

But like Carson Kolzig, Eric Dafoe has made tremendous progress. "Fast forward," Dafoe says. "He just turned six, and he's about to graduate kindergarten in an integrated program. He's reading and writing, and in advanced math."

Kolzig's and Dafoe's sons are on the milder end of the autism spectrum. Still that doesn't mean the future is guaranteed.

"We're still in unknown water," Dafoe says. "We don't know if Eric will live on his own or with my wife and I down the road."

The uncertainty to which Dafoe refers is a common theme with autism spectrum disorders. To parents just receiving the diagnosis, there is so much uncertainty about what to do next. It can also feel like there's no one in the world that understands what you're going through.

That's what led these three NHL players to lean on one another, but also to do something more. All three were already active participants in community relations before autism touched their lives. All three wanted to do something to help ease the difficulties faced by others receiving the same diagnosis. The result is Athletes Against Autism, an initiative of the Cure Autism Now Foundation (CAN), a non-profit organization dedicated to accelerating the pace of scientific research with the goal of finding the cause, effective treatments and a cure for autism.

Kolzig, Dafoe and Mellanby are the three founding members of Athletes Against Autism. The group's mission statement proclaims, "As fathers of children with autism, they realized the importance of using their status and influence to make an impact on the over 1.5 million people in the United States alone affected by autism, and their families."

"We came up with the concept two years ago," Kolzig says. "It's taken time, but now we're getting a bit of momentum, with fundraisers and Autism Awareness Nights around the League. Slowly but surely we're getting the name out there."

"Olie had a meeting with someone from CAN," says Dafoe. "He talked to me and we agreed we wanted to do something. Rather than just go off on our own and try to start a national charity, CAN stepped up and has thrust us into the forefront and has given us every resource to succeed."

Mellanby, who had held fund-raising events as part of his own foundation in previous years, said Triple-A, as the initiative is known, "is something (the three of them) felt we could do together. It's still in its infancy stage."

Dafoe and Kolzig were best friends long before they learned they both had a child with autism.

Autism Awareness Nights have been held with the Capitals, Mighty Ducks and Islanders already this season, raising funds and growing awareness. Three more are scheduled this season: in Nashville on April 1, and in Philadelphia and Atlanta on April 15.

"To have that night (in Atlanta) will mean a lot to me, Mellanby says. "It's been a couple of year trying to get this together, but we're starting to get some recognition and grow awareness."

As professional athletes, Dafoe, Kolzig and Mellanby are among the very best in the world at what they do. They are famous, handsomely paid, and admired and envied by countless hockey fans. But when confronted by autism, they're no different from any other parent. Fame, wealth, success ... none of it can prepare a parent to face the possibility that their child may be dealing with something as serious as autism.

In speaking with these three men, I sensed both the hurt and the hope in their voices. It's a feeling I know well. I, too, am the parent of a child with autistic spectrum disorder. When Kolzig spoke of the "nightmare" of learning the diagnosis and not knowing what to do next, I nodded my head on the other end of the phone. Mellanby described it as a "kick in the gut," and I've been there. When Dafoe talked of the uncertainty of the future, there was a pang in the bottom of my stomach that speaks to the same fear of the unknown.

My family has confronted our battle with hope, anger, fear, and frustration. There have been some amazing peaks and some devastating valleys on our journey as we have watched our now five-year-old son, Trevor, make incredible progress. We have tried to educate ourselves and make sure we are doing the best thing for him. But we haven't always spoken comfortably about our situation to people outside our family.

It's no small thing to acknowledge the most difficult things one confronts in life, and having achieved a measure of fame and fortune doesn't make it any easier. Dafoe, who speaks about this difficult topic with an amazingly upbeat attitude, says one of his goals is to "let Joe from down the street know that it's OK that you have a child with autism. It's all about benefiting the kids and letting people know that it's OK to be public about it."

Athletes Against Autism will hold it's major fundraising kickoff event in June, a celebrity golf tournament in Santa Barbara, Calif. The goals will be to raise awareness, and to raise funds in support of the research initiatives of Cure Autism Now. I plan on being there to lend my support in some small way.

Kolzig met with players from the American Special Hockey Association at Washington's Autism Awareness Night.

Hopefully, there will be plentiful media coverage. These athletes understand the value of attention from the press and they know that by lending their names to the cause, they can make the voice stronger. Maybe somebody will hear about the tournament and make a large donation to Cure Autism Now. Maybe a parent or relative who's been harboring concerns about a child will see the stories and seek a professional evaluation of their child. Maybe somebody will read this article and do the same.

Every 21 minutes, a child is diagnosed with autism. Every 21 minutes, another family is introduced to the world of autism, a world without many answers. Early diagnosis is crucial, and knowing and recognizing the warning signs is vital.

"If you suspect anything with your children -- anything at all -- don't let one pediatrician who is reluctant talk you out of (having the child evaluated)," says Kolzig. "Go seek a second opinion."

"We'd like to put a list of resources of doctors, therapists, etc. for people to on the Triple-A web site," says Dafoe. "There needs to be something for people to try without having to break their back to find out what it is."

Maybe autism has not touched your life. Consider yourself fortunate. It's also probably just a matter of time.

"If you don't know somebody affected by autism today, you will soon," says Mellanby.

If Dafoe, Kolzig and Mellanby have their way, their efforts will better prepare you for when that moment occurs.