May 09, 2012 0 Share

"Normal People Scare Me": Learning to LIsten Louder

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Keri Bowers and her son, Taylor Cross, are on a mission to destroy society's definition of “normal.” In the process of co-producing their groundbreaking documentary film “Normal People Scare Me,” Cross, a young man on the autism spectrum, interviewed 65 individuals with autism. Bowers, who created Normal Films and continues to produce, is also a public speaker, workshop leader, and nonprofit advisor. The interviews in “Normal People Scare Me” are a portal to greater understanding of how individuals on the spectrum view the world. (And yes, unanimously, individuals with autism agreed that normal people do, on occasion, scare them.) Autism After 16 talked with Bowers to learn more about the making of this unique film. 

AA16: What led you and Taylor to make “Normal People Scare Me”? Whose idea was it? 

KB: The film was Taylor's idea. I had always used the arts to encourage Taylor to emerge. When he was eight or nine, I put him into community service, thinking that that would help him. At first, he was too involved in himself and his own needs to see other people and their needs, but every year, as he did more, he became more able. 

When Taylor was 14, he said, “This year, I want to pay for a gift for families who are less fortunate at holiday time.” And I said, “OK, great. What can you do to earn money? You can clean the swimming pool.” And he said, “ No. I want to make videos and sell them.” So that began the conversation. I tried to convince him of all the reasons why it wouldn't work [to make a film], I said no … and then I thought: This is my son, the one they said might never walk or talk. So I said, “I'm sorry, Taylor, everything I just said was a lie. Let's make a film.” 

[“Normal People Scare Me”] began as a 10-minute student film [with mentorship from Joey Travolta, who Cross met through Travolta’s workshop on filmmaking for individuals with special needs] and later turned into full-length feature. The 10-minute short received attention from major publications and from the Internet; people wanted to buy it. From there we decided to make the full-length film [with Joey's technical assistance and mentorship]. I asked Taylor, “You interviewed five people [for the short film] … what if you could interview more people and get a more in-depth perspective?” And he wanted to do that. In the end, he interviewed 65 people. 

AA16: How did you and Taylor select interview subjects for the film? 

KB: We definitely had to do outreach for our subjects; I probably knew 10 of the subjects. We put [a request] out on the Internet, saying, “We want to hear your stories.” What was really hard—and this is the one negative comment we've received—is that there aren't enough people [represented in the film] who have no language. There was a reason for that: We didn't have the skill set to communicate effectively. The film features a half-dozen people who are nonverbal. It was something Taylor didn't feel he was able to do. And, since this was a joint venture, he had to agree and I had to agree. 

AA16: In an interview about Taylor's early years, you say, “I thought I was just somehow a bad mother.” How did you move past the self-blame? 

KB: Well, the early blame was fed to me, in writing: “Mother's failure to bond caused deep psychological distress.” Taylor wasn't diagnosed until he was six; the DSM-IV had been rewritten so he could be diagnosed. I had been widowed prior to Taylor being born, and I'd had a childhood without a lot of maternal support. I had issues as a young girl of self-esteem, and so when these doctors told me that I wasn't bonding with my son, it was my biggest fear come to life. My biggest fear was that I wouldn't bond with my son the way my mother hadn't bonded with me. 

How did I overcome it? There was no Internet, no listing in the newspaper for “a group for moms with unusual children,” so I began to make things up in art. I began to use paint, photography, filming, and dance. I'd been an artist my whole life. 

For the first year, it was hard for me to fall in love with [Taylor]. I loved him, but I didn't feel those “pink fuzzies” because something was “wrong with him.” I had fears of him dying, and getting too close was just too unbearable for me. 

One day, a neurologist said to me, “I can't tell you if Taylor will walk or talk.” That night, I was ... crying in my pillow. I asked God, “Why me?” The answer came back, “Why not you?” And when I woke up in the morning, I felt madly, wildly, crazy in love with [Taylor]. And I said to myself, “If this is our life, then I accept that, and I'll do anything and everything I can to make this work.” I realized I had to work on my self-esteem issues, my fears, my guilt … all the things we take on when we're attempting to overcome the death of a dream. 

AA16: Was it challenging to work with Taylor on this film? Were there times of frustration in the creative process? 

KB: There definitely were times of creative frustration! When we did the 10-minute film with Joey, it was more Taylor's gig than it was mine. I was there every step of the way supporting him, but once we decided to make the feature film, I had to pay Joey! I had to explain to [Taylor], “Once you're in you're in. Mom's putting money into this.” It became a contract with us! 

There are examples of [moments where Taylor struggles to continue] in the film, when he's sitting and sifting sand, not wanting to interview people. There were times when he didn't understand what people were telling him, and how to have patience with the process. It was all part of his story. 

AA16: In the film, when Taylor talks about all you've done for him, the first thing he mentions is his freedom to go out and interact with his community. Can you tell us about this decision to allow Taylor the dignity of risk? 

KB: It was very methodical, and it was very scary at times. When Taylor was about 10, he met his friend Vince; he was introduced by his coordinator. And this young boy had a single father, and [the father] started to go along with my ideas [about the dignity of risk]. 

[The father and I] would sit on the porch, and say, “OK, boys, to the corner and back.” And we would watch them. And once they had done that so many times, we'd say, “To the corner, around to the stop sign and back.” And once they'd mastered those small things, we began to give them independence on par with their neurotypical peers. For example, we would drop them off at the movies and wait outside. It took four years of little by little by little letting them go out of our sight. 

Again, it wasn't always easy. Once [Taylor] lost track of time, and he had five police cars looking for him. It came with very scary moments, but it's so important to let [individuals] fall down and get up. 

This does not apply to every child. There are children who don't understand dangers. However, even children who have fine motor skill issues or no language, it doesn't mean they can't help make the PB and J, hand over hand. Even if the laundry turns pink, they can take some personal responsibility for the chores of daily life. We're a fast society, we want results now, and it takes time. 

AA16: In the film, you mention that it's more difficult for adults with autism to go out into a world that isn't as accepting of their idiosyncrasies as it is when they are children. How can parents help their children prepare for this change? 

KB: When they're young, there's more of that “Aha Moment” [when strangers realize that a child has autism]. They see the meltdown, the lack of verbal skills. But when the kids go out in the community and appear as normal adults, there's no “Aha moment.” [People] form an opinion after seeing bizarre behavior, and it's a more negative opinion. Taylor is 6' 10” … people have a higher expectation of him! 

Some people think we shouldn't tell our kids that they have autism. Here's how I see it:  The world is going to tell them eventually anyway. Our children need to go through those stages of grief and recovery. Our children find acceptance when we teach them this lesson:  All kids are different. And these things can make life harder, but you need to know that's you being uniquely and beautifully you. 

Once, I asked Taylor, “Do you think people see the autism when they look at you?” And he said, “Mom, they can't get over how tall I am.” 

AA16: As a sibling of a young man with autism, I loved that you included an interview with Jace, your younger son and Taylor's younger brother. What do you think has been the most challenging aspect of their relationship? 

KB: They could not be in the room together for nine years, before they bonded. Jace is very talkative, and his brother couldn't talk to him, and for years felt like Taylor dismissed him, and decided that he hated him. But when Jace was nine and Taylor was 14, Taylor handed him some Yu-Gi-Oh! cards and taught him how to play. Taylor began to open up a little more, and Jace began to understand more. 

I don't like to see it as a burden, but Jace understands that after I'm gone, he's it. He's Taylor's family. Siblings are often the [autistic person’s] most long-lasting relationship, and so we have to nurture [those siblings'] souls and foster their understanding. We have to understand that they go through a lot of pain, and they internalize it more often than not. We have to be purposeful with siblings. We have to accentuate that they matter as much. Their needs are different, but they matter as much. 

AA16: When asked the question, “Do normal people scare you?” the young adults with autism say, “Yes.” If you could give one piece of advice to neurotypical individuals in interacting with adults with autism, what would it be? 

KB: I think the main advice would be to listen louder. To remind themselves that nobody's great at everything, and equate your challenges in some small way to what others [with autism] face. 

I have a one-minute staring exercise I do with audiences, during which I ask, “How many of you are uncomfortable?” Most find it uncomfortable. Next, I say, “Imagine if your minute was never up. Imagine if every day of your life, you had to be in a situation where the world is coming at you and you can't just look away.” I try to help people feel what special needs feel like, what autism feels like. Remember a situation where you felt vulnerable or unsure of yourself, a time when you couldn't communicate and got frustrated … and see [a person with autism] as a person who experiences that all the time. 

I think that if everybody put their children into community service—into some giving toward others that have unfortunate circumstances—I think that we would become more compassionate human beings. And we find a greater level of acceptance when we are compassionate human beings.