It was a scary time for the young Surhoff family in 1994 when their 2-year-old son, Mason, was diagnosed with autism. At the time, autism was not very well-known, much less understood, by the community or even by most health care professionals.
“There was no prognosis. It was ‘Your son’s autistic,’ and [it was] very cold, matter-of-fact,” B.J. Surhoff recalls.
B.J. and his wife, Polly, were left feeling stunned and unsure where to turn but, true to form, were determined to beat the game.
“When we got our diagnosis [there] wasn’t a whole lot out there,” B.J. says. “This was 1994; the internet’s just kinda getting started. So we wanted to be able to create something that could help families immediately.”
These were two elite athletes used to conquering obstacles and achieving great things: B.J., a rising Major League Baseball star with the Milwaukee Brewers, and Polly, a former All-American swimmer at the University of North Carolina. Now, they faced an uncertain future. But their shared UNC athletic background paid dividends, as hope arrived in the form of B.J.’s former college baseball coach, who introduced the couple to Dr. Gary Mesibov, director of the university’s Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) program. With help from TEACCH, the Surhoffs were able to fashion a unique treatment regimen for Mason.
However, it wasn’t until after the Surhoffs moved to the Baltimore area when B.J. was traded to the Orioles that the idea for Pathfinders for Autism was born. One day, Polly sent Mason to school with a flyer in his backpack, asking parents of other kids in Mason’s special education class to come to the Surhoff home to share information on resources for their children. That it took a flyer in a kid’s backpack to get everyone together to learn more about the disorder epitomized the struggle parents of children with autism faced then. As a well-known sports figure, B.J. became the organization’s public face, but the founding of Pathfinders was very much a group effort, that of parents with a shared motivation to advocate for families like themselves who care for children with autism.
With its beginnings at that meeting in 2000, Pathfinders for Autism, now a 501(c)(3) nonprofit organization, was founded. The Pathfinders for Autism Resource Center came 18 months later. Over time, the organization has grown significantly in size, today employing a staff of eight people, and in the scope of the services it provides. A helpline provides advice on everything from insurance to medical concerns to where to find the right speech pathologist. They organize events throughout the year where families can relax and enjoy themselves in a fun, safe environment, like trips to ball games and a night at the aquarium when it is otherwise closed to the public. To date, Pathfinders has helped more than 100,000 people in the autism community.
“The biggest thing we’re doing right now is trainings all over the state with police, fire, EMS, EMT [and] first responders on what to look [for],” B.J. says. “We’ve trained ER docs; next week we’re going to be training nurses … because it’s not an if, it’s a when,” he adds with the very real concern of a father on a mission.
“They say that when you meet one person with autism, you’ve met one person with autism,” Polly says, indicating the individuality of the disorder: every case is different.
Some people with autism may self-talk. They may blurt out things that might be inappropriate, can seem standoffish, make repetitive movements or don’t respond to conversation in an expected way. They can have meltdowns out of frustration. And sometimes people with autism don’t understand personal space. Because of this, and in our current social climate, it’s more important than ever for law enforcement to understand the signs of a person with autism before a tragedy occurs.
Polly relayed an instance from Mason’s childhood as an example. “When B.J. played, Mason was little (he’s now 24). He went up to the security guard in front of the clubhouse door, and grabbed his gun.”
While that incident was managed well, it’s easy to imagine how it could have gone terribly wrong. This is the kind of thing Pathfinders wants law enforcement—and everyone—to be aware of.
“It’s not an if, it’s a when” may seem like an easy catchphrase, but it’s true. Those engaging the public on a regular basis—doctors, nurses, police, EMS—will at some point invariably encounter people with autism. Among its services, Pathfinders provides free safety kits for parents and caregivers of those with the disorder. The kits include stickers for your windshield—with a corresponding information sheet for the glove compartment—so if you’re ever involved in an accident and rendered unconscious, first responders will know they may be interacting with a person with autism.
Last year, Pathfinders had a meeting with the Baltimore County Executive, his staff and local fire and police chiefs about implementing a program for law enforcement and first responders on how to interact with people with autism. Even today, it might surprise many that doctors may not be trained to specifically recognize autism in a patient. To remedy this, Pathfinders also distributes standardized screening toolkits to pediatricians.
In another initiative, the organization has partnered with the Michael Phelps Swim School, where the staff is trained specifically in autism awareness and accommodations to incorporate into swim lessons. Many with the disorder gravitate toward water, so swimming is a necessary safety skill, but aquatic therapy also addresses the poor muscle tone and sensory integration issues that accompany autism. Pathfinders helps offset some of the school’s costs for participants with scholarships and funding.
In spite of nationwide efforts to raise social awareness, many people still don’t understand autism. And sometimes they can be abusive to those with the disorder. At times, parents will find themselves apologizing for their child or explaining their behavior. But in the Surhoffs’ experience, even in the rough-and-tumble world of adolescence, familiarity often breeds an organic awareness.
“When other kids are around people [with autism], and they’re exposed to them, they become way more sensitive to them. The kids [Mason] went to school with became his caregivers—they looked out for him,” B.J. says.
An experience like Mason’s–being supported by a sensitive and informed network of family, friends and professionals, is perhaps the best outcome autism awareness can achieve. With Pathfinders for Autism, B.J. and Polly Surhoff are doing their best to make sure everyone who deals with autism disorders has access to that support, too.