I thought it would be apt to end April by reading a subject the month is dedicated to. April is celebrated as Autism Awareness Month, to raise awareness about people with autism spectrum disorders. “Sam & Chester” is about a child, Sam, who lost the ability to speak and function properly at age two. The toddler who was seemingly growing “normally”, suddenly cut off from the world, grew increasingly isolated, and often suffered meltdowns. He was officially diagnosed as autistic at age four. Chester was a tiny ginger piglet, the only brown one in a litter of white piglets – the one that no one wanted. “Sam & Chester” is the story of two children who didn’t seem to fit into their worlds, and found solace in each other. Sam’s mother, Jo (the author of the book), beautifully describes the relationship between her son and his pet cum best friend, as they help each other get through life.
The beauty of this book is that it is not just a book about our animal friends. Jo Bailey touches on a cornucopia of themes within the book. Just as autism is a spectrum disorder, Jo delves into various subjects surrounding her son’s life. Ultimately it is not about a child with autism, but a family with autism – everyone in the child’s immediate surroundings is affected by and responsible for the child’s development. Jo describes her own divorce with her husband – touching the topic of how relationships between parents of a special child are affected, the shift of blame, or denial of the condition altogether. Striking balance when one child is autistic and one is not – how does one differentiate between a meltdown related to autism, or a regular tantrum by a child? When the autistic child is the older sibling, and the younger sibling shows faster developmental gains, how is the relationship between siblings affected? How much of a role do grandparents and cousins play? And of course, the presence of pets in the lives of special children. Autism is characterized by a lack of verbal communication, and animals seem to instinctively build a connection – they can teach communication and empathy without saying a word. Chester brings a whole new light to the narration. Pigs are considered the fifth most intelligent animals in the world – even higher than dogs. They are more trainable than dogs, have better focus than chimps, and excellent memory. A great many learnings here about an unconventional pet.
Many books have been written on similar themes, but Sam & Chester strikes a chord on many levels. It is not just the story of a boy, but also the story of a mother. And Jo Bailey does a commendable job in bringing her family’s story to us. You don’t need to be an animal lover to read this book; it is powerful on many counts.
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.
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.
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.
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.
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.
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.
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.
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.