Run The World #8 – ALEX & JAMIE SCHNEIDER

Alex and Jamie are identical twin brothers, diagnosed at 21 months of age as being severely autistic. Neither can communicate verbally, they cannot cross the street alone, and display self-injurious behaviors. But with running shoes on, they’re making a statement larger than any words can convey.  Alex ran the Suffolk County Marathon in 2016 in 2:56:20 (finishing in second place overall), the NYC Marathon of 2017 in 2:50:05, and achieved his current personal best of 2:48:03 at the Boston Marathon this year. The siblings have run 27 marathons and over 400 races in all, with Alex even having run ultramarathons. The Schneider Twins – as they are known in running circles – are also accomplished pianists.

brothers

Born in 1990, the twin toddlers were growing up energetic and playful, when over a period of several months, playfulness was replaced with inexplicable meltdowns, repetitive behavior, and a complete lack of response to anyone or anything around them. They weren’t reaching age-appropriate milestones in their communication patterns, and would throw incomprehensible fits. Talking about the discovery of them being autistic, mom Robyn reveals, “I was terrified. But instead of letting that fear paralyze me, it propelled me into action. We will do everything for Alie and Jamie, and we will start doing it now.”  Parents Robyn and Allan started home schooling them, and along with a small group of other determined parents, turned their home into a therapy center, which subsequently became the Genesis School in 1995 – opened specifically for those with autism.

Being nonverbal, the boys couldn’t talk about what they liked, but much could be discerned from their reactions to activities. Increased agitation or acting out were signs they didn’t enjoy something. Calmness, or even a smile, counted as positive indicators. They tried horseback riding, swimming, gymnastics, soccer, karate and basketball. While some activities were more successful than others, the boys’ love of exercise and its ability to help calm them became apparent.

Now twenty-eight, the Schneider twins started running when they were fifteen years old. Mom Robyn discloses how the family had heard about a running club that paired experienced runners with those with developmental disabilities.We always wanted to explore because they can’t say what they like and what they don’t like, so the only way for us to know is to experience things”. Alex and Jamie began running three times a week and eventually began participating in races. Given the boys’ severe autism, finding coaches who could intuitively understand and work with them was difficult. And even though the boys are identical twins, they are unique in their approach to running. Alex is exceptionally fast, but doesn’t know he’s being competitive and is more euphoric about putting on his bib at the start of the race. Jamie on the other hand is a social runner, lingering around water stations with the volunteers and taking his own time to finish.

According to coaches Shaunthy Hughes and Mike Kelly of the Rolling Thunder Running Club, Alex and Jamie were natural runners. The boys didn’t know when to stop, and would only stop when told to do so. They didn’t understand pacing, and every run was a race. Kevin McDermott – the fastest runner on the team –  then became Alex’s personal coach, and under his tutelage and methodical training, Alex consistently began setting new records each year.

kevin
Alex with Kevin McDermott, who was instrumental in identifying Alex’s athletic gift.

The boys participated in numerous races for their high school cross country team. After eleven years of coaching Alex, McDermott moved away in 2017, from where Boyd Carrington and Sal Nastasi took over. Robyn runs shorter races with Jamie, and her husband Allan runs with him on longer distances.

boston 2013
Jamie and Alex at Boston 2013

Mom Robyn speaks about their sensitivities, characteristic of autism. In the aftermath of the Boston bombings, they had stopped running and eating. The boys were diagnosed with catatonia – a condition that affects behavioral, motor and vocal responses. At the New York City Marathon in 2014, someone once blew a giant horn in Jamie’s ear, and he exhibited self-injurious behavior that lasted for fifteen minutes on the route. In 2018, braving some of the worst weather conditions in the 122-year history of the event, Alex completed the Boston Marathon in a (for him) disappointing time of 2:56:54. A few weeks later, at the Long Island Half Marathon on May 6, Schneider finished seventh overall at 1:16:30.

boston 2018
Alex at Boston 2018 with coaches Boyd Carrington and Sal Nastasi
boston 2019
The trio at 2019 Boston, where Alex achieved his PB of 2:48:03

According to coaches Nastasi and Carrington, the boys do not understand the concept of elapsed time and can’t even lace up their own shoes, but their athletic gift needs to be nurtured. The coaches have reported finding themselves transformed by the experience of spending hours with someone who resides in the mysterious realm of the spectrum. They don’t know the difference between a 5K and a marathon. They won’t eat or drink if food and water are not offered. They have no sense of the weather or temperature, and do not express pain. Their coaches are always on the lookout for slight changes in gait or running mechanics that would suggest a problem. They pace them to direct them through the course, remove hazardous obstacles on the route, offer a jacket if it’s cold, are attentive to road crossings, check constantly for injuries and blisters – all requiring great diligence and responsibility that goes beyond merely training an athlete to finish strong. 

5k
Alex with coach Carrington at Massapequa, 2018

Stephen Shore, a PhD professor who has Asperger’s Syndrome says, “Such single-mindedness is a hallmark of the condition. A number of us do have great focus. When we focus on something, that becomes the entire world.” Repetitive behaviors, fixated interests, strict adherence to routines – all characteristic of autism – are also helpful for training. Russell Lang, director of the Clinic for Autism Research, Evaluation and Support at Texas State University, reiterates how running as a sport emphasizes repetitive behavior, which aligns itself well with the characteristics of autism.

family
Working together as a team.

Parents Robyn and Allan both began running because of the boys. Allan, 62, suffers from multiple sclerosis but discovered that running helped him feel better physically. Robyn began running at Allan’s insistence while she was battling breast cancer, and found a joy and freedom in running. The discovery of running helped them all spend more time together as a family.

family2
Dad Allan with a new bike for mom Robyn, as she accompanies Jamie on his training runs.

When Alex and Jamie aren’t pounding the pavement, they enjoy swimming, horseback riding, shopping and going out to eat. They also play classical music on the piano thanks to the Occupational Octaves Piano Program and weekly lessons. They don’t read music, so when learning a new piano piece, the keys are labeled with colors, and colored pipe cleaners are attached to the brothers’ fingers. They even play in concerts and recitals.

swimming

mom
Jamie, Robyn and Alex
dad
Jamie with dad Allan

“The thing that warms my heart is when people look at our boys and see them as runners or pianists, not as kids with autism,” says Robyn said. “Alex and Jamie have abilities, they just show them differently. So, when people respect them and celebrate who they are and what they can be, it makes all the difference. A difference that extends well beyond 26.2 miles.” In addition to caring for her sons, running and advocating on behalf of those with autism, Robyn has written a memoir, “Silent Running: Our Family’s Journey to the Finish Line with Autism.””Even though my sons will never read the book, my inspiration was to leave a legacy for them,” she informs. Alie and Jamie Schneider live in a very different world. And yet, it is one in which the simple motion of putting one foot in front of the other has made a significant difference.

brothers2
Jamie and Alex at the Massapequa 5K Firecracker race, 2018
family3
The proud “Autistic and Athletic” family.

Sources:

~www.autismrunners.com

~www.newsday.com

~www.espn.in