On-screen, autism is usually portrayed as part of an incredible and often uplifting tale. Audiences embraced "Rain Man," with Dustin Hoffman as an autistic math whiz, and "Spider-Man" producer Laura Ziskin has optioned the life story of Jason McElwain, the autistic Rochester, N.Y., teenager who scored 20 points in the last four minutes of his high school basketball team's final home game.
But the parents and families of autistic children say that depictions of such extraordinary stories risk misleading the public unless they are balanced with more varied accounts. People with autism may be highly intelligent chatterboxes or nearly catatonic, but broadly speaking, it's characterized by impaired social function, difficulty with communication, and repetitive movements. With estimates of children with an autism disorder running as high as one in 166, several new documentaries -- "Autism Every Day," "Autism: The Musical" and "Her Name Is Sabine" -- are attempting to broaden the public's understanding of the condition.
"There is no information," says documentarian Lauren Thierry, whose son, Liam, was diagnosed with autism two months before his second birthday. "It hasn't been portrayed. So everyone's in fear of it. It's like this bad word."
A CNN financial reporter, Thierry gave up her broadcasting career to care for her son. (Her husband, Jim Watkins, is a news anchor at WPIX in New York.) But when Bob Wright, the former chairman of NBC Universal, asked if she would be interested in making a documentary about autism, she jumped at the chance.
A raw, sometimes harrowing look at 24 hours in the lives of eight families with autistic children, "Autism Every Day" was initially produced to be shown at a benefit for Autism Speaks, the charity founded by Wright and his wife, Suzanne, after their grandson was diagnosed. But after the film "went viral" on YouTube, Thierry expanded it from seven minutes to 44 and submitted it to the Sundance Film Festival, where it was shown last year. It will air on Sundance Channel on April 2, which the United Nations has designated World Autism Awareness Day.
Crosscutting among its unnamed subjects (including the Wrights' daughter Katie), "Autism Every Day" creates a composite picture of the pressures of raising an autistic child. Parents describe children for whom the most basic of bodily functions are arduous tasks, who lash out violently and bite their own limbs. Alison Singer, Autism Speaks' vice president of communications, describes being so distraught at the prospect of placing her daughter in an overcrowded special-needs school that she contemplated driving them both off a bridge.
"Autism Every Day" has drawn criticism for presenting an overly negative view. But Thierry says that diluting the financial and emotional strain that raising a child with autism can place on a family would have contradicted her own experience. "I had a mandate," she says. "Tell it like it is."
All about the kids
Tricia Regan, whose documentary "Autism: The Musical" has its HBO premiere tonight and will stream for free on the channel's website, www.hbo.com, for a week beginning Wednesday, took a different approach.
When Regan, an established documentarian, was approached by a group of parents wanting to make a film that would increase autism awareness, "I was like, I don't think you want to make a movie about autism, because nobody's going to come and see it," Regan recalls. "Who wants to sit through an hour and a half of autism? I'd rather have root canal."
Regan's strategy was to focus on the children and their families. "You need to make a film about the kids themselves, because they're the great thing," she remembers saying. "You need to make a film about them trying to achieve something, and autism is their obstacle." Something, she suggested, like a play.
As luck would have it, Elaine Hall had just started the Miracle Project in Vista Del Mar, a collaborative theater program for children with autism spectrum disorders and their families. An acting coach, Hall had seen encouraging results using theater people as therapists for her autistic son.
"To be a creative person, one has to go into a space that isn't the normal life," Hall says. "The stage becomes the great equalizer. Everyone comes forth with their own gift, their own talent, their own expression, their own ability. With theater, from nothing you can create anything."
Diane Isaacs, who appears in the film along with her son, Wyatt, says the Miracle Project was "transformational" for her. "I look back, and there's pre-Miracle Project with Wyatt, and there's post-Miracle Project. It was definitely a transition point."
In the movie, Wyatt's parents struggle with finding the right school for him, and he frequently discusses his fear of bullies and his difficulty making friends. But being on stage brought out Wyatt's inner ham. He has become the movie's unofficial spokesman, introducing screenings and fielding questions afterward.
Also featured in the documentary is Henry (son of musician Stephen Stills), who is more ambivalent about being in front of an audience. At a recent screening in New York, he buried his head in his mother's lap when the audience erupted in applause. But he has also expressed an interest in standup comedy and emceed a benefit for the Miracle Project.
As much as it opened new avenues for her son, Kristen Stills says the experience opened her eyes as well. "At home, as a parent, you definitely don't want to stretch them more," she says. "You definitely don't like that idea. Everything's hard. We just want to make things comfortable. Elaine has this magical way of pulling them just enough out of their comfort zone so that they can experience something new and not feel fearful about it."
Stills, who helped draft Regan for the movie, says they were determined to avoid making a "gloomy" film. Regan cut interviews with experts to focus on the families' stories, reasoning that the scientific understanding of autism is changing so rapidly that any explanations would instantly date the film. "No one is ever changed by facts," Regan said. "Unless you have a visceral experience, you won't be altered in any real way."
A transformed life
Like Regan, the French actress Sandrine Bonnaire says her documentary "Her Name Is Sabine" is "not a movie about autism" but about people whose lives have been transformed by it. Bonnaire's younger sister, Sabine, who was 38 when the film was made, was institutionalized for five years in the late '90s, when she began to turn violent after the death of her brother. Confined and drugged, she withered from the lack of stimulation.
Bonnaire's documentary, recently released on DVD, cuts back and forth between footage of Sabine in her 20s, a bright, alert young woman, and as she was a few years ago: heavy, sluggish and constantly drooling as a result of heavy doses of medication. Though Bonnaire says Sabine's state in the film is a significant improvement from the way she was in the institution, the contrast is jarring, a stark illustration that caring for someone with autism is a lifelong undertaking and that doors once opened can shut again.
Bonnaire's focus was on emphasizing the need for better long-term care. "A hospital is not a home," she says. "You go to a hospital when you are sick, but Sabine is not sick. She has a handicap. She needs a home." The facility where Sabine lives was created only after Bonnaire used her celebrity to draw attention to the need for public financing.
For Bonnaire, the movie's most important function is to allow audiences to experience Sabine's joys and pains, to see that her feelings are no less profound than other people's, even if they may be more difficult to decipher. People with autism, she says, "have the same feelings as us, the same emotions," she says. "They don't express themselves like we do, but so what? Who cares?"Copyright © 2015, The Baltimore Sun