(left to right): AutistiX dad john Duggan, an unidentified fan, Jack Beaven-Duggan, Luke Steels, Jim Connelly, Saul Zur-Szpiro, and Saul's dad, Michael Zur-Sxpiro
Pretty much from the moment our trans-Atlantic Skype video call begins, 19-year-old AutistiX bassist Luke Steels is busting chops. He begins with mine. Unsure whether Premier Guitar is known to him and the other core members of the London-based band on the call—20-year-old guitarist Jack Beaven-Duggan, 22-year-old drummer Saul Zur-Szpiro, and 35-year-old vocalist/bandleader/mentor Jim Connelly—I begin by introducing myself and asking if they’ve heard of PG.
“I’ve heard of it too many times,” Luke deadpans.
Band manager Susan Zur-Szpiro, Saul’s mom, immediately chimes in from somewhere offscreen, “You can tell he’s the band joker.”
I’m not fazed. Having witnessed Luke’s spur-of-the-moment humor in multiple YouTube videos—including a touching 10-minute documentary by The Guardian that begins with him saying what a “miserable” experience it is being in the AutistiX, and another clip of a charity-gala performance where he decides to invite legendary singer Tom Jones onstage—I’m fully expecting a call full of playful banter and good-natured ribbing. On that score, Luke does not disappoint: At various points in our call the tall, robust guitarist who reluctantly dons a 4-string for the AutistiX will joke about just about everything—from his bandmates’ supposed regret about inviting him into their group, to killing Jack if he ever finds out he’s a Justin Bieber fan, and listening to Motörhead while in the womb.
It’s not just Luke’s antics that are grabbing the AutistiX all sorts of attention around the world, though. For starters, Jack, Luke, and Saul—each of whom has been diagnosed with at least one type of autism spectrum disorder (ASD)—are fearless performers with a deep passion for music. Case in point: They didn’t bother approaching Sir Tom Jones beforehand about joining them onstage. When the obviously surprised and nervous crooner of hits like “She’s a Lady” and “It’s Not Unusual” finally joined them and was informed they’d be playing the Beatles’ “Help,” he explained he’d never sung it before but would do his best, then quickly popped a throat lozenge. To uproarious laughter, Jack then reassured Jones through the mic for all to hear: “Always believe in yourself.” (“I thought it [the lozenges] was cyanide pills, personally,” Luke quips during our call. “That’s an extreme way to get out of it.”)
But the AutistiX are turning heads at least as much because of their inspiring story. And it’s not just showing up in feel-good local newspaper pieces, either. It’s resonating with everyday people. It’s resonating with musicians and artists. (Filmmaker Eddie Sternberg based a central character in his I Used to Be Famous—a contender for Best British Short at the recent Leeds International Film Festival—on Saul Zur-Szpiro.) It’s resonating because it’s an unlikely coming together of simultaneously unique yet typical young men who defy stereotypes and refuse to be fenced in by their challenges. That might sound cheesy and cliché, but a closer look reveals that it’s probably an understatement.
Still in the Shadows
In the last decade or so, society has come a long way in understanding and accepting people with ASDs. Positive steps include the recent unveiling of an autistic Muppet named Juliaon the long-running children’s program Sesame Street, as well as occasional spot-on media portrayals such as NBC’s depiction of the young Max Braverman character, a boy with Asperger’s syndrome, in the Parenthood series that ran from 2010 until early 2015.
That said, unless you’re close to someone with an ASD, there’s a good chance the word “autism” primarily conjures vague memories of the debunked theory that autism is caused by mercury-tainted vaccinations. Or perhaps two-dimensional stereotypes so prevalent in movies and TV shows, where more often than not autistics are weirdoes who can’t carry on a conversation but are mind-boggling math geniuses or expert memorizers. It’s no wonder the mystery remains, though. According to the latest statistics from the U.S. Centers for Disease Control and Prevention, only about 1.5 percent of American children have an ASD. And The Lancet, one of the country’s oldest and most respected medical journals, estimated in 2013 that only about 22 million people are afflicted worldwide. It’s common enough to register as a hazy blip on everyone’s radar, but rare enough to keep the condition misunderstood and in the shadows.
The lack of awareness isn’t due to a complete lack of truth in popular stereotypes about autism. The problem is that most aren’t familiar with the “S” in ASD—the more accurate way of referring to the condition. Broadly defined, autism is a disorder of the brain and central nervous system that impairs social interaction and communication—verbal and nonverbal—and is often accompanied by repetitive behaviors and preoccupation with very specific interests. The word “spectrum” denotes a wide range of variation within a group of subjects that share some core commonalities. But the thing is, even autistics and their loved ones grapple with the spectrum concept. Sometimes the symptoms are so subtle or so confined to a specific area of difficulty that they’re often not diagnosed and treated for years. Sometimes youth with ASDs agonize in silence and isolation while parents overlook difficult-to-detect cues or misread behavior and think, “It’s just a phase.” Or worse, mete out punishment when troubling behaviors arise rather than responding with love and committing to finding help.
While travails vary widely for ASD sufferers and their families, they share two key things in common: feelings of powerlessness and frustration, and heartbreak over how difficult it can be for autistics to form the sorts of meaningful friendships every human craves.
Behind the Smiles
Onstage and off, Saul, Luke, and Jack appear to the average observer as nothing if not upbeat. Who wouldn’t be happy rocking in the limelight and getting attention from journalists and independent filmmakers? But just like the rest of us , the AutistiX autistics don’t necessarily wear their troubles on their sleeves. If they did—if the true extent of their struggles were apparent—chances are society would be quite different.
AutistiX prankster Luke has been diagnosed with attention deficit disorder (ADD), oppositional defiant disorder (ODD)—defined by the American Psychiatric Association’s diagnostic manual as “a pattern of angry/irritable mood, argumentative/defiant behavior, or vindictiveness lasting at least six months”—and high-functioning (i.e., relatively mild) autism. Jack has Asperger’s syndrome, a condition that impedes normative social interactions due to inhibited capacity to perceive and process nonverbal interpersonal cues. Asperger’s is also typically accompanied by extreme focus on niche interests, and reflexive urges to engage in unusually repetitive physical movements or sounds (also called stimming).
Drummer Saul faces even greater challenges. Besides having low-functioning (severe) autism, he’s essentially blind, has intense difficulty speaking, and cannot feed or clothe himself, among other serious health issues.
“When Saul was young, he couldn’t do very much of anything, to be honest,” says Susan. “We used to call him our living doll.” Although he also suffers from hyperacusis—meaning he can experience fierce pain and agitation from environmental noises such as barking dogs, car horns, and crying babies—Saul surprised his parents as a child by perking up when he heard rhythms and repetitive sounds such as football chants, the doorbell, or music played at various support groups. An epiphany came one day about 12 years ago when Saul’s sister’s guitar teacher picked him up and sat down behind his other two sisters’ drum kit.
“He could barely reach the pedals or hold the sticks,” Susan recalls, “but it was really one of those light-bulb moments. His eyes lit up like I had never seen before. In that moment, I realized drumming could be something for him.”
Given Saul’s physical limitations, however, realizing this epiphany took some serious workarounds. “He was very weak and tiny for his age,” Susan continues. “He couldn’t hold the sticks, so we had to use Velcro. And he couldn’t reach the pedal of the bass drum, so we got something to build it up.”
After taking lessons from a general music teacher for a while, Saul progressed to a dedicated drum instructor. “At some point, that teacher said music wasn’t something you should do in isolation. It took about another year before I felt Saul could cope with being in a group [because of his hyperacusis].” But now, Susan explains, “the music is stratospheric—it’s everything for him.” Indeed, watch Saul in action and you’ll see he couldn’t hide his joy and enthusiasm if he tried.
“Looking at him, people have an expectation of what he’s able to do—whether it’s family members who have seen him only in a social setting, or people who see what he looks like and see him being physically led to the drum kit because of his impairments. But when they see him pick up his sticks and start playing, they’re absolutely blown away.”