American Spirit

by Taya Kyle

  That’s what they look like to the people around them. What about from the inside? What does it feel like to have Asperger’s, or even to be “on the spectrum,” as the common slang goes.

  Jesse Saperstein knows. More than that, he’s shared it with the world.

  Now in his thirties, Jesse remembers becoming aware that he was “profoundly different” around fourth grade. It was then for the first time that he started becoming a regular target of bullies, pushed around, and taunted.

  Though not physically small, he was very shy about fighting back. Worse, the one time he did fight back—he charged into someone who had been pushing him—it was Jesse who got in trouble. His school counselor and his parents urged him not to strike back, advice that Jesse took to heart—but which inadvertently made him an even bigger target as he grew older.

  The physical and mental abuse continued through middle school and peaked around ninth grade. Some of it was comparatively mild, if being called “sketchy Jesse” and ostracized because he was different is mild. Jesse continued to grow, and eventually his size made him less of a physical target. Mental abuse continued, however, including a case where he was “catfished”—a form of cyberbullying where an invented girl- or boyfriend is created and used to taunt and tempt the victim. Aside from ridicule, targets can also become the victims of financial fraud. In Jesse’s case, the idea was a cruel prank perpetrated by a classmate or classmates; it was eventually discovered, but the pain of the incident remains fresh many years later.

  One of the things that made life somewhat easier for Jesse was his decision to share information about his condition with his classmates. They knew he was different, but like most people, they had no real understanding of Asperger’s. And in some ways, it would have been hard to tell, as Jesse often kept to himself. His grades certainly didn’t give him away, and when he did open up, even his “weirdness” had many positive aspects. To cite one of many metaphors Jesse himself uses, spending hours at Chuck E. Cheese’s working on a drawing may seem strange, but if the result is a beautiful work of art, people will think you are artistic, not artistic and autistic. Wearing the same clothes for days on end may make you seem lazy, not autistic. Or autistic and lazy, as the case may be.

  Because autism exists on a spectrum, people who are “high functioning”—Jesse would fall into that category—may just appear to be jerks, not developmentally handicapped. But they are the latter. Not only are they not inconsiderate, they don’t know that the concept exists.

  Until, of course, they are diagnosed and helped by counselors and parents.

  Explaining his condition to his fellow students was one step in a long process for Jesse as he got older. Gaining acceptance from his peers was another step; those who didn’t bully him gradually focused on his other personality traits and consigned his Asperger’s to “different” or “weird but OK in general” categories.

  People with Asperger’s tend to have trouble with transitions in life, whether these are big or small. In high school, it took until Jesse was a junior to really feel more comfortable with his surroundings. When he did, he became active in school organizations, including the school newspaper, and that had a big impact on his life. The interaction with others, and the fact that he was helping a good cause, gave him confidence as well as strength to deal with or ignore the bullies. His fellow students voted him “Most Unforgettable” in the yearbook, one measure of how far he’d come since fourth grade.

  Getting support, increasing your self-worth, finding a community to belong in—these are all very good things, but they are not magical solutions to every problem. Jesse’s Asperger’s didn’t go away, and while life may have become easier in some respects, he still had hurdles to climb every day. He was admitted to college, where he majored in English with a minor in peer education. He got a job as an RA, or resident advisor, which took him further out of his shell.

  It was around that same time that Jesse happened to read Bill Bryson’s excellent travelogue about hiking the Appalachian Trail, A Walk in the Woods. The book inspired him to consider undertaking some sort of physical and mental challenge that would set him on the road to adulthood. He decided on a literal road, or I should say trail, through the woods: the Appalachian Trail, the two-thousand-plus-mile mountain trail that stretches from Georgia to Maine.

  Funded in large part by leftover college savings, Jesse set out to walk the entire trail himself, raising money for the Joey DiPaolo Foundation, an AIDS-related charity. Like many hikers, he started in the south at the tail end of winter, working his way north over footpaths that wind across rocky peaks and craggy valleys. Unlike most hikers, who complete different sections of the trail over several years, he did the entire trail with only a one-week break in the vicinity of his home.

  “It’s thirty percent physical,” says Jesse of the long trek, “and seventy percent mental.”

  He learned something new every day, made some good friends, got annoyed at some strangers. But most of all, he persevered, overcoming foot sores and minor injuries, bouts of loneliness and homesickness, and the sort of bone-chilling fatigue that can overtake you after you’ve hiked a few dozen miles a day for days on end.

  His trip lasted seven months and nine days. He was relatively lucky; he never got seriously ill. He did not contract Lyme disease—endemic in certain areas—and, miracle of all, he didn’t get poison ivy, even though there were times when he feared he was “bathing in the stuff,” which grows, well, like poison ivy in many parts of the trail.

  “Every morning I told myself I made a choice,” he says of his main method of self-motivation. “I had to get up, because I made a choice.”

  A choice to continue. A choice to accomplish something that few people—with or without some form of autism or other condition—don’t even get the chance to try.

  The hardest part?

  Writing a journal every day.

  The journal was important, not simply because he wanted to remember what happened but because by then he had another project in mind—a book that would tell people what Asperger’s is like.

  Jesse finished his trek before mid-fall snows blocked the northern reaches of the trail. He raised some $20,000 for the foundation. And he had some fresh stories for the book.

  Published in 2010, Atypical: Life with Asperger’s in 20 1/3 Chapters, covers much of Jesse’s life to that point. It remains one of the few that talks about what Asperger’s, and autism in general, feels like to people who actually have it. It’s filled with funny stories—Jesse has quite a sense of humor—as well as bits of advice for others with the condition and their parents. It’s not a how-to-live with-the-condition manual, however; Jesse’s second book, Getting a Life with Asperger’s: Lessons Learned on the Bumpy Road to Adulthood, is much more practical in that regard. Published in 2014, it directly addresses issues from bullying to getting a job and is aimed directly at others with Asperger’s.

  Telling others about Asperger’s has become part of Jesse’s mission in life; besides the books, he’s now a speaker on the condition and has a website where he posts information and tips about coping with Asperger’s.

  Oddly, for a long time he resisted helping his peers with the condition. Maybe it was too close to home; maybe he felt they should figure things out for themselves as he did.

  All that changed a few years ago, when he took a job as the social media and activities liaison with the College Experience (www.thecollegeexperience.org), a two-year, nondegree program at the College of Saint Rose in Albany, New York. Jointly run with an organization called Living Resources (www.livingresources.org), the program helps young men and women with intellectual disabilities prepare for independence by teaching them crucial life skills. It includes a specially tailored curriculum at Saint Rose and internship program with local businesses. Part of his job involves working closely with the alumni program, organizing and leading outings, and overseeing the alumni community volunteer program. He also teaches creative writing classes an
d helps train new employees.

  “The best teachers [for others with Asperger’s and similar conditions] can be people who have been through it,” he notes. One thing he tries to do is advise others to learn from his mistakes, rather than making them on their own—good advice for all of us.

  People with Asperger’s can be very trusting, and they often fall victim to frauds, whether in real life or on the internet. Another common problem is a lack of boundaries—a boy who likes a girl may not understand that following her around is not only unwelcome, it could easily be considered a crime. And Jesse is adamant that people not use a disability—whatever it may be—as an excuse.

  It’s a struggle at times. Asperger’s is not a condition you outgrow or put into remission. And the wounds from his youth are deep. But when someone treats him poorly, he remembers the advice a friend once gave:

  You can’t please everyone.

  Trying to leads to bitterness and obsession, rather than improvement. And that’s true for all of us, autistic or not.

  “You have a right to be angry,” he says. “But not to take it out on others.”

  If you met Jesse today, you almost certainly wouldn’t know that he has Asperger’s. You might think he was a little eccentric—but then what writer isn’t? He tends to be precise and direct when talking, but you’d never suspect the hard work he’s done improving social skills that most of us take for granted. You’ll catch that he’s results oriented—something the world can certainly use more of.

  If you happened upon him near his home in Albany, you might end up being recruited to one of his latest pet projects—picking up trash. He is part of a local “OneLess Campaign” devoted to cleaning up the city one piece of litter at a time. The group has what Jesse calls “flash cleanups”—members gather for perhaps an hour and blitz a certain area to clear it of debris. (There’s a Facebook group—naturally—at www.facebook.com/lesstrashmoresmiles, if you’d like to see what they do or want to get involved yourself.)

  As part of his personal war on trash, Jesse has adopted a bus stop near his house, disposing of random bits of refuse. One less soda can, one less candy wrapper, and little by little, the street looks cleaner, and somehow the day seems brighter.

  Some notes on Asperger’s:

  We still don’t know everything there is to know about autism in general, and experts continue to study and debate the nature of Asperger’s. While for the moment it is considered the “higher range” of autism—meaning that those who have it generally function better than others on the autism spectrum—there are experts who believe further research may place it in a different, perhaps separate, category. In any event, those with Asperger’s generally develop “normal” cognitive and verbal skills, unlike others on the autism spectrum. Outward symptoms include extreme social awkwardness, a lack of fine motor skills, difficulty with nonverbal communication—body language and gestures, failure to understand others’ emotions (as opposed to simply ignoring them), and obsessions with unusual topics or items. On the other hand, those with Asperger’s often have advanced vocabularies and can be quite articulate—like Jesse. The condition does not affect intelligence.

  Asperger’s generally becomes apparent around four years old. Inappropriate social skills often lead to trouble in social situations and ostracization as a child. Frustration with everything from simple misunderstandings to bullying can lead to behavioral issues.

  The exact cause is not yet known. There is evidence for both genetic and environmental factors. It is not, however, a result of the amount of attention or love a child receives.

  The condition seems to affect more boys than girls, though more research is needed to determine whether this is due to girls not being diagnosed. It has been estimated that one out of every 110 children in America has an autistic condition and that 2.5 children out of 1,000 have some form of Asperger’s. Much more has to be learned about these conditions.

  There is a common belief that some people with Asperger’s “grow out of it.” That does not appear to be the case, though adults with the condition can and do learn to cope with the difficulties through perseverance and hard work, by parents, families, teachers, counselors, and most of all themselves.

  The Blind Bikers of Central Park

  InTandem

  In a world where everyone suffers, it’s easy to see the pain. The beauty is seeing how one spark of light, one story of perseverance, ignites a fire in others and propels them forward, perhaps at first alone, and then in tandem.

  Some lives are like dramas with many acts. Artie Elefant’s was one of them.

  In the first act, Artie was a successful businessman in New Jersey, heading the sales and marketing department of an electrical component company. By all measures, he had a good, comfortable life.

  In the late 1970s, some friends of his began running. He and his wife were inspired by their example and began running themselves. Both eventually got to the point where they could attempt the New York City Marathon. Artie ran the New York City Marathon in 1981, finishing in just under four hours, a nice achievement for a middle-age person who was relatively new to the sport.

  Having done it once, he felt no need to do it again, but he stayed active, running recreationally. Life continued as before.

  Then came a second act.

  As Artie reached his fifties, odd things began to happen. People began appearing instantly alongside or even in front of him. He’d stop short or even walk into them, stunned that they were able to come so close without him seeing. The rooms he was in—rooms he was very familiar with—suddenly seemed very narrow, far smaller than before. At night, he had trouble seeing in the dim light, a problem he’d never had before.

  Artie went to the doctor, who diagnosed him with retinitis pigmentosa, a rare genetic disease that robs its victims of sight over time.

  No disease or genetic condition is kind, but retinitis pigmentosa has a particularly cruel progression, as if it were slowly torturing its sufferers. A person with the condition often does not know they have it. When they are young, their vision is often perfect, or nearly so. For many, the disease makes itself known only when they are older—in middle-age, like Artie.

  It’s a thief, stealing sight a little at a time—first making night vision difficult, then robbing a little around the edges as it takes away peripheral vision. Gradually it narrows what a person can see until only a small pinhole of vision remains.

  Shocked by the diagnosis and alarmed at the doctor’s prediction that he would quickly lose his sight, Artie decided to make major changes in his life. The most important was retiring from his job, since he had a list of things he wanted to do with family and friends before he lost the ability to see.

  And so began Act Three.

  In 2000, retired but still checking the must-dos off his bucket list, Artie took his running hobby up a notch and got involved with the Achilles Track Club, a running club in New York City.

  New York has many running clubs. By far the best-known organization is New York Road Runners. The group sponsors the Marathon; has numerous other races; acts as a partner, mentor, and model for smaller clubs; and even has its own app and virtual races. Sixty years old, it is the granddaddy of the community recreational running movement.

  But it’s not the only club in town. The others range from very informal groups of five or six people who meet on weekend mornings to run in Central Park to larger organizations that sponsor formal races on their own.

  The Achilles Track Club is somewhere in the middle in terms of size and age. What makes it special is its mission: Achilles caters specifically to runners with disabilities. And while now there are many similar groups around the country and even others in New York, at the time Achilles was started in 1983, its mission was as unique as it was praiseworthy. Today, the group’s members include amputees, people with traumatic brain injuries, people with MS and cancer—if you can think of a disability or serious disease, the odds are someone with it is running or has ru
n with Achilles.

  Someone who is blind or has very limited visions needs to run with a guide. As a general rule, they are connected by a tether each holds in their hand. The tether can be anything from a shoelace to a bandana; its length and width vary by pair, but the general idea is for the two runners to be close enough to stay in stride without bumping into each other.

  Blind and limited-sight runners were still something of a novelty in the wider world of running when Artie joined Achilles, but there couldn’t have been a better ambassador for the sport. There’s a cliché in running circles about the “loneliness of the long-distance runner”—a notion based on the reality that runners often spend hours alone, running their daily workout. With Artie, that idea had no currency. Blind runners typically run with a single guide who becomes accustomed to their stride and strengths. Artie ran with a veritable army each time he ran, its members changing and growing.

  “Artie’s Angels,” he called them.

  Twenty-five years after he had run his first New York City Marathon, Artie ran his second. His pace was considerably slower and included a few stops with the Angels for chocolate and other tiny snacks—something that didn’t feature into the more competitive earlier race. But this one was surely more fun. Alerted to the presence of a blind runner—rare in any marathon then—people gathered on the street corners in every borough and cheered Artie on.

  Artie soon branched out. Why run “just” a marathon when you can swim and bike instead? Competing with the help of a single, dedicated guide, he undertook several triathlons in the New York area, doing so at a time when it was almost unheard of for a blind athlete to compete.