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

Advertisements

Autism and Running

Autism Awareness Month is celebrated in April, with April 2nd being the occasion of World Autism Awareness Day. Let’s meet the Schneider twins. 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 and a spring in their steps, they’re making a statement larger than any words can convey. They are runners. Alex ran the Suffolk County Marathon in 2016 in 2:56:20 (finishing in second place overall), and completed the NYC Marathon of 2017 in 2:50:05, his personal best. The siblings have run 26 marathons and over 400 races in all, with Alex even having run ultrathons. The boys are also accomplished pianists.

schneider twins
Alex and Jamie Schneider

Now 28, the Schneider twins started running when they were 15. Their mother Robyn Schneider reveals how the family had heard about a running club that paired experienced runners with those with developmental disabilities. According to coaches Shaunthy Hughes and Mike Kelly of the Rolling Thunder Running Club, Alex and Jamie were natural runners; the only hurdle being finding a running partner for Alex who was exceptionally fast along with being especially gifted. 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 then became Alex’s personal coach, and under his tutelage and methodical training, Alex consistently began setting new records each year. 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.

6b2c64ec079bbb98cb5ce48943dc7594
Alex with coaches Carrington and Nastasi

Robyn runs shorter races with Jamie, and her husband Allan runs with him on longer distances. The boys have limited communication skills but display receptive language – they require simple words and slight gestures to understand and respond. They cannot fathom how long a race is and will only stop when they cross the finish line. When the Boston bombings levelled the finish line in 2013, Alex had already completed the race, while Jamie was still on the route with their father (ultimately being stopped and ushered away at mile 22). 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. Their coaches pace them to direct them through the course, hydrate them when thirsty, remove hazardous obstacles on the route, offer a jacket if it’s cold, are attentive to road crossings – all requiring great diligence and responsibility that goes beyond merely training an athlete to finish strong.

schneider-1521138358
The Schneider Family

Tommy Des Brisay was a highly active child. He began walking at 8 months of age, bounced on his trampoline for hours on end, and slept only 3 hours a night. He was diagnosed with autism at age two, and would run whenever he was stressed or upset. Running was all he knew – without comprehending traffic, weather, strangers – thereby exposing himself to all sorts of dangers. When he was fourteen, his father took him along on his daily run, hoping to channelize his movement. “Take something someone is instinctively driven to do and make it into a positive“, says his mother Mary Ann. The medications he was taking to cope with the challenging symptoms of autism, caused Tommy to battle weight issues. Consistent training helped him shed 35 pounds and brought down his 5k race timings to 24 minutes. The first time he won a race, he was confused about where everyone else was, so he turned back and ran the route again. Tommy, who will turn 27 this month, now runs the 5k at 15:17, a half marathon at 1:10:34, and a full marathon at 2:38:50. He “passes time” on the route by reciting lines or singing songs from his favorite movies. The speedy timings don’t sync with the seriousness of the runner, because he doesn’t realize he’s competing. According to his dad, Tommy’s pace usually keeps him surrounded by serious runners who look at him in bewilderment while they’re breathing hard and he’s humming a tune from a Disney movie.

tommy-1521139099
Tommy Brisay

Scientists are beginning to explore what makes running as a sport a potent tool for people with autism. Autism is a spectrum disorder with a wide range of symptoms and behaviors, along with individual variations that go along with it. The spectrum is primarily characterized by deficits in social communication and interaction, and restricted or repetitive patterns of behaviors, interests and activities. Both, the Schneider as well as Brisay families, have pointed out how running has reduced anxiety in their children. It increases their social circle, giving them opportunities to practice their language and communication skills. Over the ten years that Tommy has been a runner, he has been less reliant on medication and experienced fewer meltdowns. Tommy did not speak till he was seven and his verbal abilities only grew through his teens, which his parents credit to running as being the catalyst. Research has also confirmed what both families have noticed with regards to running and autism. At the Academy of Pediatric Physical Therapy section in the 2016 Pediatrics Annual Conference, researchers from Achilles International and New York Medical College presented the findings of their studies on autism and running. Statistically significant improvements in social awareness, cognition, endurance, communication and motivation, and fewer restrictive and repetitive behaviors were seen in those who ran for a minimum of two days a week.  While exercise in general can benefit people on the spectrum, running offers it’s own unique advantages.

il_794xN.1708397094_rnma

Mikey Brannigan is one of the most prominent runners known to be on the autism spectrum. He was diagnosed with autism at 18 months of age, and couldn’t speak until he was five. Team sports were out as he couldn’t understand rules and scored for opposing teams. When he was fourteen, his dad Kevin took him to Rolling Thunder (the same club where the Schneider twins trained), where he was found to keep up with older and more seasoned runners. Organized running got him on the high school varsity team, and by senior year he was one of the top runners in the country. According to his mother Edie, running also brought about boosts in his academics. In August 2016, the then 20 year old shattered the four minute mile barrier, running at 3:57. Brannigan hopes to make the US Paralympic team in 2020 or 2024. Jonathan Bruno was diagnosed with autism at age two and a half, and was sixteen when he joined Rolling Thunder. He ran his first full marathon in 4:48:08 at the 2008 NYC Marathon. He has run 10 NYC marathons and 8 Boston marathons so far, along with one 50k Ultrathon, running for various charities. According to his brother Verlaine, he doesn’t understand the concepts of pace or time and needs help with reading and directions.

mikeybrannigan-1521138220
Mikey Brannigan
bruno
Jonathan Bruno

19 year old Zoe Jarvis runs a 5:16 mile and credits running to helping her make more friends. The running community is inclusive and a runner is a runner, says Tommy Brisay’s dad. “He’s not an autistic guy or a different guy, he’s just a guy running“.  21 year old Grace Ling was diagnosed with Asperger’s Syndrome at age eight, and credits running to giving her the motivation to do things. Andrew Novis, 55, is also afflicted with Asperger’s Syndrome (one among the autism spectrum disorders), and ran his 18th Boston Marathon in 2017 in 3:11:24. He runs both marathons and ultrathons. “You can choose to look at autism as a disability or as a collection of abilities“, says Tommy Brisay’s mom, and it holds true for all these runners on the spectrum.

zoejarvis-1521138409
Zoe Jarvis
grace-ling-1521139016
Grace Ling
andrewnovis-1521138961
Andrew Novis

Repetitive behaviors, fixated interests, strict adherence to routines – all characteristic of autism – are also helpful for training. Coaches of runners with autism need to be diligent about their athletes being impervious to pain and not communicating about pain the way other runners might. People with autism are usually prescribed occupational therapy, speech therapy, applied behavior analysis, and social skills groups. According to Russell Lang, director of the Clinic for Autism Research, Evaluation and Support at Texas State University, all conditions do not require complex interventions. How does one decide which form of intervention is better than the other? Most professionals recommend exercise only to counteract weight gain as a side effect of medications prescribed to manage symptoms associated with autism. Exercise, however, could eliminate the need for or reduce the dosage of these medications in the first place. (Christopher McDougle, Lurie Centre for Autism). According to Tommy Brisay’s dad, running is the best medication for his son. Russell Lang reiterates how running as a sport emphasizes repetitive behavior, which aligns itself well with the characteristics of autism.

superman
Jonathan Bruno sees himself as an Autism Superman

Sources:

http://www.autismrunners.com

http://www.runnersworld.com

http://www.theartofautism.com

http://www.autismsuperman.com

The Autism Anthropologist