Autism: the Art of Compassionate Living

By Jennifer Liss, WireTap. Posted July 11, 2006.

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.

Jennifer Liss is a contributing writer of WireTap Magazine living in San Francisco.

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