OKAY! A film of autism and music comes to The Little Theatre
The opening scene is four musicians rehearsing in a garage. So this is truly a garage band.
“We’re all going to be forging brilliance together,” says guitarist and vocalist Jackson Begley, with some sly degree of sardonic tone. “I’m looking forward to it.”
Yet, despite drummer Spenser Murray’s nose ring and his lilac hair color, The ASD Band is not a typical rock band.
“ASD is autism spectrum disorder. That’s where the name comes from, and that’s what makes the band go,” Murray says.
“OKAY! The ASD Band Film” plays Thursday and Sunday at The Little Theatre. It’s a part of The Little’s One Take Documentary Series. Also associated with this is Move to Include, a partnership between WXXI Public Media and the Golisano Foundation, the nation’s largest private foundation supporting programs for people with intellectual, developmental and physical disabilities.
In the film, we follow the Toronto group — its members are all in their 20s and 30s — as it is beginning to create original songs. All the while, the four musicians share their stories of autism with startling self-awareness.
Andrew Simon is the film’s executive producer. He also played a key role in assembling the band — although, at first, he wasn’t aware that assembling a band was exactly what he was doing. Simon will be participating in a video talkback after Thursday’s showing at The Little.
“One in 66 children born in Canada is autistic,” Simon says, talking by phone from his home in Toronto. “Everybody knows somebody, so that’s how we brought those folks together.”
Autism is referred to as a spectrum, and that’s for a reason. Among The ASD Band members, autism comes with a wide range of behaviors.
Begley explains it well in the film.
“From my personal experience, having autism is, is sorta like you’re an actor in a play, and it’s opening night, and everyone else has the script, and you don’t,” he says. “And so you just have to fake your way through, putting a lot of effort in trying not to make a fool of yourself.”
They’re self-aware. And sometimes dismissive of the characteristics which some people around them see as defining the band members as different. The curious personal script followed by Begley since childhood includes expressing himself as an Elvis impersonator.
“OKAY! The ASD Band Film” also gives us lead singer Rawan Tuffaha, sporting deeply swooping eyeliner, like a portrait of an ancient Egyptian queen. She talks about how she obsesses over small matters, such as makeup. And, Simon points out, Tuffaha does impressions of characters from “The Simpsons.”
“Honestly, I yearn to be popular,” Tuffaha says, “because I wanted to not be seen as something wrong.”
Begley needed that boost as well. “Once Jackson understood his role was a safe space,” Simon says, “that’s when he opened up more.” As Begley admits in the documentary, “I’m thinking about what I’m doing all the time. Because I don’t want to seem off or weird or this or that.”
As a musician, Murray leans punk, to the dismay of the neighbors. When he was a child, his mother thought he was blind, because he would stare at nothing for hours.
And Ron Adea went from what appeared to be a typical childhood pattern of learning speech before descending into a sudden and inexplicable silence. He talks now, although his words are sometimes difficult to interpret, and his thoughts will tumble out as non-sequiturs. As a pianist, he ranges from classical to the rock of The ASD Band. At home, he bakes banana bread.
Adea has a curious mental power: Pick any date in history, and he’ll tell you what day that was. At one point in the film, Adea’s bandmates test him.
“June 10, 1994,” one says.
“It’s on Friday,” Adea says with no hesitation.
And he is correct.
It’s Adea who punctuates conversations with “OKAY!” All caps, and the exclamation point included.
The band was born at a World Autism Day benefit for Jake’s House, a Toronto collective that provides support for people with autism and their families. For that fundraiser, Roger Hodgson, lead singer of the rock band Supertramp, was set to perform its 1977 hit “Give a Little Bit,” accompanied by a 47-piece orchestra in a theater for a live audience.
But Simon was thinking bigger.
“Having done some research, and knowing that those on the spectrum have many interesting abilities, and one of them is music ...” he says, his voice trailing off.
We pick up that thought in a moving video of the event, as four autistic musicians – including Adea, Tuffaha and Murray – are brought onstage to perform alongside Hodgson.
“Roger loved it,” Simon says, “and the audience went nuts.”
Out of what was intended as that one-off moment, with the addition of Begley, The ASD Band was born. Maury LaFoy, who does not have autism, is called on to play bass and serve as musical director and, Simon says, act as the band’s “sherpa.”
There are no promises, just a “let’s see how this goes” kind of thing. A musical collaboration that might unlock the promise of these four people. “The most social thing you can do,” Simon says, “is join a band.”
At first, The ASD Band played other musicians’ material. So the next step in this organic growth was for the band to create its own songs.
“The most important thing to me is it is their expression,” Simon says. “I didn’t want it to be our expression, because that’s how we think the music should be.”
Tuffaha wrote the words for a song, “Fireflies,” based on her experience with autism. A call to not underestimate what they can do, Simon says, “and the fact that they are like a shining light.”
“Don’t underestimate anything,” he says. “You talk to them and go, ‘Wow, this is quite a struggle, but then they write beautiful music, and play beautiful music.’”
Details needed to be worked out. An online search for someone to design a logo for the project led Simon to Adam Barkworth, an artist from the United Kingdom. He created a slashing lettering of ASD, with one version superimposed over a portrait of the band.
As that project was completed, Simon asked Barkworth to record a selfie video in which he talked about the design. “He emails me back,” Simon says, “and says, ‘I can’t do that, because I’m nonverbal.’ And to me, that was, like, the moment when the world stopped.”
Simon had been unaware that Barkworth, too, has autism. As Simon says, “it’s an appreciation that the spectrum is very wide.”
And it was clear that the film should not shy away from what he calls “the full spectrum.” What Simon says is one of the important scenes in the film is an appearance by the founders of Jake’s House, the husband-and-wife team of Irene and David Bodanis. They have two sons who are at the most extreme end of the autism spectrum. “I think it’s really important for people to see the full spectrum,” Simon says. “Not just, like, here’s four talented musicians who seem to be completely comfortable with the world.”
The message: “Wow, that’s a whole different form of somebody who can’t communicate really at all,” Simon says.
Begley is the only ASD musician who lives on his own. The others are at home with their parents, often in what Simon calls a “complicated family situation.” Siblings with significant autism, a parent with multiple sclerosis.
So Simon sees the four portrayed in the film as “optimistic and positive, but they’re also real.” Another harsh reality, he says, is Murray is the only one of the four with a stable job; he works at an airport, de-icing planes in the winter. Others have had part-time work, at a local Tim Hortons franchise or a frozen-yogurt shop before it went out of business.
“That’s really what this whole thing is about,” Simon says. “It’s a story of acceptance, it’s a story for all of us to accept others and reality. But it’s also amazing to see them, for all their struggles, to see them just take on life. And just go, ‘OK, next, next challenge, let’s do this.’”
Among the challenges The ASD Band has answered: gigs at the annual Canadian National Exhibition and Toronto’s Massey Hall.
And Simon says a California producer, Scott Steindorff, who has been involved in some big-budget films and television shows, has been flying around the continent and Europe, assembling a documentary on autism. It wasn’t until he was an adult that Steindorff himself was diagnosed with Asperger’s syndrome, a part of the autistic spectrum.
The ASD Band is on Steindorff’s radar for the documentary.
“Opportunity,” Simon says, “comes when you do good things.”
This story is reported from WXXI’s Inclusion Desk.