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Autism: the Art of Compassionate Living
A few days after our interview, Camilla Bixler, an autism advocate and mother of an autistic son, left me a long voice mail. She had failed to mention, she said, something incredibly important about a parent's struggles with autism. "My husband and I have two jobs. We have to prepare our child for the world, and we have to prepare the world for our child."
Camilla's position is echoed in the thoughts of many families and educators: Autistic children are not safe and will not succeed in a "typical" world if that world is misinformed about their disorder. Along with the sobering statistic that 1 in 166 children will receive an autism spectrum diagnosis, in recent years we have been hit with conflicting perceptions about what autism really means. There's President Bush in front of Air Force One congratulating teenager Jason McElwain, autistic basketball wonder-boy, for his feat of sinking six three-point shots and one field goal in four minutes during a game. And then there's the tragic McCarron family story. Over Mother's Day weekend, Illinois pathologist Karen McCarron, confessed to suffocating and killing her 3-year-old autistic daughter and then attempting suicide.
Stories like these send out a mixed message. Are autistic people all "Rain Man" types who possess extraordinary, superhuman talents? Or is autism a horrifying and incurable condition that pushes families to the edge?
Mother of an autistic son and ex-CNN news anchor Lauren Thierry set out to tell the straight story in the short film "Autism Every Day" by exposing the daily lives of five families. The film was created to be shown at a highbrow fundraiser for the organization Autism Speaks. But after its May premier, Don Imus aired the film on his popular show. Then the video clip was posted on dozens of message boards, blogs and other websites, and within a week both autistic and nonautistic communities were passionately reacting to the insider's autism film. And Thierry is now working on a 50-minute feature, with an invitation to submit to the Sundance Film Festival.
When asked what is the biggest misperception people have about autism, Thierry says there are so many -- from the myth that autism is psychological and can be cured through institutionalization to the false belief that all autistic people are mentally retarded.
"People assume that there is no hope," she says. "That is the most debilitating (misperception). People think, how could you possibly spend time trying to bring him out of his shell when his brain is so damaged?"
And then, she points out, the most common erroneous perception: Autistic children are savants. "George Bush with that sweet and winning basketball star -- that's the guy the president chose to pose with. The message Bush is sending is: Why give funding when all we have to do is find a skill they're really good at?"
"The party line is supposed to be that anything that raises awareness you're supposed to be happy about. That notion is 10 years old. At this point we need to be showing the world what the vast reality truly is." She says that reality includes images of kids not sleeping through the night, banging their heads against the wall or running into traffic -- not images of kids setting basketball records or passionately playing the violin.
Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work.
One mom's statement, Thierry says, sums up a parent's relationship with autism, "He's trying so hard to stay in himself, and I'm trying so hard to pull him out all the time."
As Thierry and her husband, Jim, watched the raw footage, one thing became clear. "The commonalities are striking," Jim said. "These women seem to finish each other's sentences." Their stories blend together: having to quit careers, having to borrow insane amounts of money, having to let go of dreams for their children -- little league, trips, dating, having strangers demand they control their kids, having to quit friendships with people who don't understand. The film's opening chilling montage shows the children screaming and struggling to communicate.
The mom of three children on the autism spectrum (whom Thierry affectionately calls the "bagel lady") responds to friends who ask her to take a morning off. "Yes, in another life, I'd love to come out for a bagel. But right now, I have to write down what he is doing so we can go home and work on that, and then I have to take the other two to therapy, so no, I can't go for a bagel."
The majority of the harsh criticism surrounding the film is directed at Alison Tepper Singer, a mom featured in the film and a staff member of Autism Speaks. About midway through the film, Singer discusses her reaction to inadequate classrooms. "I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools." It was only because of her other child, she said, that she didn't do it.
Both autistic and typical families have reacted with outrage and disgust to Singer's statement -- calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron. Thierry responds by calling Singer "gutsy and courageous." She was expecting a call from Singer asking that the footage not be used. But that call never came. "You don't say stuff like that -- camera rolling -- unless you are truly ready to play ball with the entire world," Thierry says.
If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds. "If this is not your reality, then God bless you," she says.
The film has also been criticized as being driven by a philanthropist agenda. Autism Speaks was founded by Bob and Suzanne Wright; Bob is the chairman and CEO of NBC Universal and the chairman and executive officer of General Electric. But the Wrights are also grandparents of an autistic child. When they approached Thierry to make the film, she didn't know what to expect. But, she says, they didn't make any demands -- even when she interviewed their daughter -- except that she reveal the truth.
"They never looked over my shoulder; they never asked for a progress report. Like any other family with an autistic child, they were probably too caught up in Christian's world to worry much about the film they had commissioned a few months back. And when they saw it for the first time, a few days before the event, all they did was cry. They never touched one single frame of it. Not one," Thierry noted.
Many people I spoke with said that it is only a matter of time before every American will know someone diagnosed on the autism spectrum. In the meantime, parents still find that the world hears autism and sees an image of an abandoned child rocking uncontrollably in the corner. Mike O'Farrell says that when his daughter is slow to respond, he does not tell people that she is autistic -- he says that she has speech delays -- because he's found that most people recoil or just don't get it. And Adriana Squarzon recounts a painful story of being kicked out of a doctor's office when the doctor couldn't handle her son's resistance to getting a shot.
Irma Velasquez, founder of the Wings Learning Center a nonpublic autistic school in San Mateo, Calif., recently launched an awareness program aimed at children -- perhaps the outreach tool with the biggest payoff. Velasquez and her staff go into typical schools and educate nonautistic kids about the disorder. Then they invite the kids to come to Wings and interact with their students. Velasquez says that so many kids want to come that they can't even accommodate them all.
"We want children to hear and understand what autism means. And, for them to imagine what it feels like to be autistic," she says. "Maybe then they'll be less judgmental when they see people on the street behaving a certain way."
A mom featured in "Autism Every Day" felt similarly.
"I would like people to second guess themselves when they look at me and think: (a) I can't control my child or (b) I'm abusing him because he's screaming. Have a little bit more compassion and show that to your child as well."
Jennifer Liss is a contributing writer of WireTap Magazine living in San Francisco.