“There’s obvious myths about what a child with autism can do,” says Elaine Hall. “I plan to shatter those myths.” Her route to such shattering is a musical she calls “The Miracle Project.” Conceived, written, and performed by a group of autistic children, the project takes some six months from start to one-time-only presentation. Introducing the concept to parents and children, Hall concedes, “I know they’re skeptical. But she is determined and resilient, her faith born in part of her nine and half years experience with her autistic son Neal. “I can promise you,” she tells her group, “the first couple of weeks are gonna be chaotic.”
Hall describes her sense of mission for Autism: the Musical, Tricia Regan’s documentary on the musical and, in large chunks, five families grappling with autism. Hall’s own story forms a kind of center, her life with Neal inspiring her dedication and optimism. She recalls bringing him home from Russia when he was just 23 months old (“In about 30 seconds or so,” she recalls of meeting Neal, “he ran into my arms and we started rolling around and he was my guy, he was my kid”). Shortly after their return to the States, Hall says, she and her husband noticed the child’s difficulties sleeping (for years, he didn’t sleep more than two hours at a time) and when Neal was seven, the couple split. After years of trying different approaches to reach Neal, Hall found one she calls “joining his world.” “He would spin in circles,” she recalls, “we would spin in circles.” Toward this end, she enlisted help from “theater people, who had no problem with things out of the ordinary.” They embrace his “big affect,” she says, “and they’d join his world until he was ready to join our world.” Her own decision to join became professional as well as personal, in undertaking the Miracle Project, though which she and a small team “teach children with special needs acting and movement.”
Elaine Hall, Adam, Henry, Lexi, Neal, Wyatt
Regular airtime: Tuesday, 8pm ET
US: 25 Mar 2008
The film complicates and enhances Hall’s fierce hope with a series of stories of anger and resentment, generosity and dynamic love. The parents of the kids in the show reveal they have particular troubles, even as they commit to the project. Lexi’s parents, Hillary and Joe, are in the throes of a break-up. She recalls their first reaction to learning Lexi’s diagnosis, after years of visiting doctors who had no answers. “As far as Joe and I were concerned,” Hillary says, “that was really bad news. Autism meant standing in a corner banging your head against the wall, in a diaper, it was, you know, I mean it was devastating.” In separate interviews, the parents talk around their own relationship, citing their different responses to Lexi. While Joe lists stages (denial, resolve to “fix it,” sadness, and acceptance), Hillary wrestles with guilt and depression. “I’ve tortured myself over the years,” she admits, “thinking that in order to fully love her and parent her, I needed to be able to understand her head.”
But over the course of the film, even as her relationship with Joe deteriorates, Hillary appears to find new ways to understand her love for Lexi. Meeting with a group of the parents with children in the musical, Hillary expresses her rage at a world that can’t recognize the need to come to terms with autism. With the numbers of diagnoses rising (in 1980, one out of every 10,000 U.S. children was identified as having an autism spectrum disorder; as of 2007, the Centers for Disease Control and Prevention estimates that one in 150 may be affected), it’s clear that some sustained and increasingly nuanced set of cultural and social responses must develop. At the moment, as Hillary declares passionately, “I can’t make [people] value [Lexi], I can’t make them respect her and make them think she’s got the same rights that they do.”
The film doesn’t explore causes (about which there is little agreement), though it does feature mothers who voice theories (Henry’s mother offers “the kettle of beans” theory, a list of possible causes that accumulate to “tip over” the kettle: “Here’s the vaccinations, here’s the antibiotic, here’s the toxic environment, here’s mercury in the fish mom ate while she was pregnant…”). Instead, the film focuses on how specific families understand their situations. The sheer range of possible effects is daunting, as the kids can be verbal and socially engaged (Henry is diagnosed with Asperger’s Syndrome, and displays an avid knowledge of dinosaurs) or less able to engage with the world socially.
More often than not, parents confront obstacles when they try to pave the way for their children’s engagements. Wyatt’s parents visit with a lawyer, hoping to find an advocate for the child they see as “high functioning,” a term used frequently in describing one set of “degrees” measuring ASD. “He wants to be mainstream,” Diane tells the lawyer, “but he really can’t hold his own in mainstream, and he doesn’t want to be with the special kids, because he’s very high functioning.” The lawyer tells them bluntly, “Based on these tests, it would be very difficult for someone to say he’s a high functioning autistic child.” Back home, Diane and her husband Greg describe their frustration, not only with the lawyer’s “diagnosis,” but also with his fee schedule ($420 an hour). “You really feel helpless,” Greg says, “it’s actually really depressing.”
While Wyatt’s parents are united in their frustration, Adam’s parents, Rosanne and Richard, are working through a series of dilemmas, including his recent affair with another woman. “My job,” Rosanne says, “is to do everything I can to try and keep [Adam] out of an institution. There are a lot of symptoms of autism, and those symptoms are the locked room that make an autistic child not develop. And what you can do is you can crack open those doors.” Richard sees her devotion in another way: “You see an awful lot of single moms of autistic kids. There’s a lot of reasons men leave women,” he laments, “but women overlook the fact they may have been a factor, not the only factor, but they may have been a factor, by being so monomaniacal or self-involved with the kid.” While the film doesn’t judge their situation or take sides, it uses this family as yet another example of the many ways families with ASD kids are like and unlike every other family.
While Elaine Hall has to contend with anxious parents, she remains admirably focused on her work with the children. While she notes that ASD children live in a world that can be scary, she describes the experience of autism in accessible, unscary terms: “When all the stimulus is coming in, the brain doesn’t compute it in the same way,” she says. “There’s so much going on sensorially that it can be overwhelming. And that is what can cause a child to retreat and be in their own world.” Using the musical and the movie, Hall and her Miracle Project invite viewers to “join” the worlds of ASD children. While the parents struggle and make their own sorts of “progress,” Autism: The Musical showcases the children’s own coping, not only through their winning performances, but also in their frank descriptions of their experiences. “Sometimes,” Wyatt says, “I don’t like it when kids go into their own world. I do that a lot.” But, he adds, “I like being with somebody because it makes me feel happy inside, when I’m with a friend that can be kind, that is not mean.”
// Channel Surfing
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