“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 weirdos 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.”
The AutistiX rock the Jubilee Club—one of the many London venues they frequent—on June 13, 2014.
The GenesiS
AutistiX singer and bandleader Jim Connelly has been working with autistic-spectrum groups for more than 15 years now and specializes in music workshops for newly diagnosed children. However, he fell into it all rather accidentally. His first encounter with ASD kids was supposed to be a requirement while studying performing arts in college.
“To be honest I was, like, ‘I’m not doing this!’” he admits sheepishly. “I didn’t do the [coursework] or work within the learning difficulty sector. I wasn’t mature enough at the time. This was when I was, like, 17.”
A few years later, in 2001, Jim found himself working in the field after a regulation change in Britain resulted in a lot of formerly hospitalized ASD patients being released to be treated at local community centers. “Initially, I was a support worker in either daycare centers or homes, and in the evening I’d go rock out in different bands. Around that time, I was working with a label called Mint Source that’s now called Pure Mint Records.
“It didn’t really dawn on me until about four years ago [in 2010] that maybe the two might correlate with one another,” he explains. “I remember the first day I met Jack and we were talking about music. Literally a week after that, it was put forward that we could use the [group meeting] space as a rehearsal space.” Jim soon met Saul, an acquaintance of Jack’s, and within a week the three were rehearsing. Before long, a young man with Asperger’s joined them on keytar. “It was basically me, Andreas, Saul, and Jack jamming and not really thinking about gigs or world domination or anything like that. It was just a really nice space to get together and for them to express themselves. Since then, being in the AutistiX for me is a two-hours-per-week rehearsal, and then we might have a gig or two per month.”
By Susan’s count, the band plays 20 to 25 gigs per year, including an annual Beatles charity festival and multiple functions around London. They recently completed a one-week tour of Germany, they’ve gone on jaunts to Spain, and they have two EPs—Butterflies & Demons and Just the Same/Something Better—for sale on iTunes. Susan credits Jim for making it all possible.
“Jim is really exceptional, both because of his professional experience and his personality,” she says. “His level of understanding and the way he facilitates creating the music is incredible. He’s very democratic, very good at encouraging. It’s very non-hierarchical—we don’t have any power plays. He tries to nurture the talent of everybody in the band.”
“I like the family dynamic,” says Jim. “The challenges I might have with Saul physically or maybe with Luke sometimes, those just make it 10 times better, really.”
Not Gilmour and Waters
Asked what their favorite part about being in the AutistiX is, the bandmates’ answers are virtually unanimous—though of course each has his unique way of putting it. “It’s really just playing with these guys at gigs,” says Luke, “and also not having a band I get into an argument with every five seconds. That’s one way that we’re not like Pink Floyd.”
“My favorite thing about being in the AutistiX,” says Jack, “is … any of us can bring in songs we’ve written in our spare time. Everyone takes part in it, making it into a better song.”
Saul’s answer is short but emphatic: “Perform and gig,” followed by, “Jack and Luke.” His sister Mia, also on the call, adds, “These guys are his closest friends. I think he also loves having his own songs—he always says the titles of his songs. I think he loves having that sense of ownership and creativity, not just enjoying the music, but making music.”
Anything but Beliebers
So which artists influence the music these guys write together? It couldn’t get much more diverse. “My favorite singer, easily, is Otis Redding,” says Jim. “And by far my favorite British act is Radiohead, because their albums keep getting better and better. I suppose my connection with Jack and Saul is, when I was growing up, I used to think I was [Oasis lead singer] Liam Gallagher.”
Jack—whose main gear consists of a Fender Modern Player Jaguar, a Vox AC30, and MXR Distortion+ and Chorus pedals—loves Oasis, Green Day, Feeder, Linkin Park, and the Gaslight Anthem. For Saul, Bruce Springsteen is tops, followed in no particular order by the Beatles, Nirvana, British singer-songwriters like George Ezra and Will Young, and a bunch of ampersand bands—Crosby, Stills & Nash, Simon & Garfunkel, and Mumford & Sons.
“You’re the metalhead, aren’t you?” I ask Luke, whose gear includes Traben Phoenix and Kramer Focus basses, and a Behringer US600 Ultra Shifter/Harmonist pedal that he uses to send split signals to two Fender Mustang amps. (He’s also quite proud of his new Gibson Les Paul Junior 6-string.) “I have a broad taste,” he begins. “Yes there’s the metal side of things. Black Sabbath, Metallica—I do like a bit of mosh pit now and then. Apart from, like, a lot of angry music, it’s stuff like the Prodigy and Pendulum.And one that we like and know quite well is a Britpop band called Menswear. I’m also quite a big fan of Muse.”
I mention having interviewed Muse bassist Chris Wolstenholme years ago, and he replies, “Don’t tell him my opinion on Drones—that was a bit disappointing.”
Jack chimes in, “They say I look like Matt Bellamy from Muse when I’ve got my hair up.”
Luke razzes him, “Or a bad version of Charlie Sheen.”
When we get the conversation back on track I find out there’s even more diversity in the band’s sound since Jack’s dad, John Duggan, and Saul’s dad, Michael Zur-Szpiro, respectively, began adding rhythm-guitar and harmonica duties. John, a child of the ’60s, grew up on Invasion bands like the Stones and Kinks, as well as the Jam, Sex Pistols, the Clash, the Pretenders, and Motown and Stax records. Harp player Michael prefers the Stones and Chicago blues—especially Muddy Waters. Unsurprisingly, he and Susan grew up listening to many of the bands Saul cites as influences, though he’s also into American indie-folk outfit Beirut, and Baltimore dream-pop duo Beach House. He’s also careful to point out a crucial, behind-the-scenes influence that often gets overlooked.
“Without Susan this band wouldn’t happen,” he says matter-of-factly, adding with a chuckle. “She gets the gigs, keeps them together, and imposes the discipline she’s failed to impose on me over 40 years. We’re both too old to rock and roll but we’re also too young to die, so this is how we live. We live through these young kids and make great music.”
A Foreign Concept
One thing Susan never has to worry about as she keeps the AutistiX train on the tracks is whether lack of confidence will derail things once the band hits the stage. “People tend to ask us about stage fright,” she says, “but that’s one of the things that we have never, ever experienced with the band—whether it’s a small gig of 40 people or over a thousand. They just love to perform.”
I ask them what their secret is. Luke is first to answer.
“Well, I would like to say a lot of alcohol.”
Susan quickly cuts in, “It’s not—he doesn’t drink.”
“I’d like to say that….”
“That’s my answer,” Jim says dryly.
“I think they just don’t have a sense of being judged,” Susan explains. “Whether they’re alone in a room or on a stage, the rewards are kind of the same.”
“I think when I’m onstage it’s living proof that, even if you are the kind of person who needs to cut down on the pies, you can still do this.” Luke, of course.
Saul’s sister Mia joins in again. “A lot of other bands seem autistic—in terms of the stereotype—when they stand there awkwardly, don’t look at anyone, and try to act all cool. These guys are just chatty and ‘Whatever.’”
“If people come to see a show,” says Luke, “why not give it to them?”
I ask what they’re thinking about before going onstage.
Luke: “I’m usually thinking ‘What am I having for dinner?’”
Jim breaks his long silence. “Every band has their own format for warming up, but Jack and Luke especially like to run up and down.”
“Jump up and down,” says Jack.
“We were playing in Spain,” Jim continues, “and they were running up and down a courtyard. That’s always about half an hour before a gig, isn’t it?”
“I tend to think in terms of how the show might go,” Jack adds, “and about some positive messages as well—like, ‘Thank you for coming, you’re a great audience.’”
“Saul is just dying to perform,” says Susan. “As soon as they’ve done a gig, he wants to know when the next one’s going to be. He just loves being onstage. Sometimes he’s not in very good health and he’ll arrive at a venue looking green, exhausted—like he doesn’t have an ounce of energy—but get him behind the drum kit, and it brings him back to life.”
Time to Jam
As our video call pushes past the 70-minute mark, I witness first-hand the sort of anticipation Susan speaks of. The call has gone longer than expected, and Saul seems increasingly antsy to head into the other room, sit behind his black four-piece Pearl kit, and get working on tunes he and his bandmates—his family, his friends for life—will be performing live in a couple of days.
It’s been one of the most fulfilling interviews of my career, and I close with a sincere thank you to the close-knit group sitting before me in a comfy-looking rustic kitchen some 4,000 miles away.
Naturally, Luke doesn’t miss a beat.
“You’re welcome. Some people say that before you can judge someone, you have to walk a mile in their shoes. Do this and then you’ll be a mile away—and you’ll also have their shoes.”
YouTube It
AutistiX bassist Luke Steels boldly invites Sir Tom Jones onstage to perform “Help” at a 2013 benefit concert.
The Guardian’s wonderful short documentary from late 2015 takes a heartwarming look at Saul, Jack, and Luke’s lives onstage and off.