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Autism documentary features local woman, nonprofit

23-year-old talks about having misunderstood disorder
By: Sena Christian, The Press Tribune
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Amanda Hussa is known as the "computer chip" of her family.

The 23-year-old Foresthill resident's memory allows her to act as the family historian, rattling off dates and names. Her attention to facts manifests itself in her short stories, often about Greek mythology and history.

She attributes this characteristic to autism, which she was diagnosed with at age 4. But the disability has also caused downsides, such as trouble communicating and recognizing social cues.

Autism affects people differently. Hussa tells of her trials and tribulations - and successes - with the neurodevelopment disorder in the 30-minute documentary "Autism: Emerging from the Maze," which airs on KVIE beginning Wednesday, June 13.

"I hope they understand that people with autism have a voice and it can be heard, and not in the dark," she said.

She also speaks her voice by participating in Youth FORCE, which is a program of A Touch of Understanding, a Granite Bay-based nonprofit organization that presents disability awareness programs in schools. Founder Leslie DeDora also appears in the documentary.

As a member of Youth FORCE, Hussa participates in social events and service projects with disabled and nondisabled alike to break down barriers and have fun. She also makes presentations in local schools.

"I like it, seeing how the kids react and hearing their questions," she said. "I enjoy being around all the people and volunteers."

In the documentary, she talks about her autism-related struggles. Four years into life, she couldn't talk, speaking instead what her parents called "gibberish." She couldn't verbally express feelings of hunger, fear or pain, which led to tantrums.

Once diagnosed, she received help from speech and occupational therapists and soon could talk, have play dates and take swimming and ballet lessons.

Rob Stewart produced the documentary to draw attention to autism. One in 88 children in the United States is diagnosed with the disorder, according to the U.S. Centers for Disease Control and Prevention. The disorder is almost five times more common among boys than girls.

"We wanted to do a documentary about autism through the lens, so to speak, of people with it," Stewart said. "We wanted them to tell their story."

They took a day-in-the-life approach, focusing on people of different ages who have severe cases of autism. They included Hussa as an inspirational ending to the story.

Youth FORCE Program Coordinator Stephanie Solomon said she learned more about Hussa during the filming process, such as how she's a talented public speaker.

"We hope (from the film) people will be more open to meeting people with autism," Solomon said. "They may look different but we're all the same on the inside. We all have hopes and dreams and aspirations (and) challenges."

Amanda's mom, Felice Hussa, knew something was different with her daughter when she was just a baby and avoided eye contact. But her concerns fell on deaf ears with pediatricians not yet versed in the puzzling disorder.

"A sense of humor helped," Felice Hussa said. "We had some really bad years."

One particularly bad time occurred when her daughter fixated on "The Lion King" for a few years - that's all she wanted to talk about, which was emotionally draining for her family and friends.

As Amanda Hussa developed social skills and learned how to control her environment - for instance, she wears earplugs to combat sensitivity to loud noises - life for the whole family improved.

Something in her also changed when she traveled to Mississippi in 2005 to help with the clean-up after Hurricane Katrina. She developed a passion for volunteerism.

"Everybody treated me like a regular person," she said.

She wishes all people would be respectful of those with autism, like she says in a speech documented in the KVIE film.

"The next time you see a kid with autism, try not to stare at them if they flap their hands, rock back and forth, spin around or hit themselves," she said. "If you see someone bully them, you should try to stand up for them. Be kind, patient and understanding to them."

Sena Christian can be reached at senac@goldcountrymedia.com. Follow her on Twitter at SenaC_RsvPT.

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"Autism: Emerging from the Maze"

What: Documentary on children and families living with autism

When: Airs 7 p.m. Wednesday, June 13, 11:30 p.m. Thursday, June 14, 4 p.m. Friday, June 15 and 6 p.m. Sunday, June 17 on KVIE. The video is also available for viewing online at www.kvie.org/autism.

Info: www.kvie.org