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by Andrea Barrist Stern
Although many people with Asperger's Syndrome display average or above average intelligence, they face problems communicating and are often isolated socially. At no time are these challenges more pronounced than during the teenage years, a complicated emotional time for any young person, but one with additional burdens for those living with this autism spectrum disorder.
Now, a new half-hour documentary titled The Asperger's Difference: A Film For and About Young People with Asperger's Syndrome, is intended to help these teenagers build self-esteem and develop self-advocacy skills. And who better to reach this special group than three teenagers with Asperger's, the film's stars, who tell viewers from first-hand experience what it is like to live with this condition during the middle, high school and college years.
The Asperger's Difference will premiere on Saturday, November 21 at 11 a.m. at Upstate Films, in Rhinebeck. The special free showing will be followed by a panel discussion with two of the film's stars; the film's producer, Jamey Wolff, program director at the Center For Spectrum Services (CSS) in Kingston, formerly The Children's Annex; and Dr. Jane Nofer, director of the Spectrum Services Clinic at the facility, and a nationally known expert on Asperger's Syndrome. CSS, a school and related diagnostic and consulting clinic, has been providing services for children and adults with autism spectrum disorders for over 30 years. It changed its name from The Children's Annex several weeks ago to better reflect the range of services it provides.
Even before the CSS started its clinic five years ago, it had been consulting with schools and agencies about autism. Over these two decades, Wolff was struck by the special needs of teenagers with Asperger's who were able to be mainstreamed when they reached middle school, high school or college but who were not having many of their needs met.
"There was a lack of resources to help these young people build self-esteem and understand themselves," said Wolff. "I haven't seen anything that is visually oriented." This is particularly striking in view of the fact that people with Asperger's are visual learners. This is the reason the film plays to this learning style with its use of graphic content to emphasize and explain the material.
Annie, Noah and Jeff
The content of the film presents both the strengths and challenges that accompany Asperger's, told by each of the three young people - Annie, a middle school student; Noah, a high school student; and Jeff, a college student - in their own words in response to specific questions designed by Nofer and posed off-camera by Wolff. Wolff served as the producer and director.
The film is presented as a series of visual chapters in which Annie, Noah and Jeff discuss the common challenges and strengths shared by people with Asperger's: difficulty with social interaction, controlling thoughts and behaviors, and heightened sensory experience, but also talents that can, at times, verge on genius.
The film opens with 13-year-old Annie sitting on her bed surrounded by her stuffed animals and her boombox. Her experience being teased and bullied by her peers was actually one of the factors that motivated Wolff to move ahead with a film she knew was sorely needed. At school, Annie excels academically by she is challenged socially. "Believe me, I am not the life of the party; I am the death of it," she says matter-of-factly.
Noah, 16, is plagued by perfection. Reminding us that "everyone's brain is wired differently," he communicates with friendly mostly from his room and by computer. And, from his dorm room, Jeff, an 18-year-old college freshman, discusses his problems interacting with others and what he has come to label "foot in mouth syndrome." He has also created his own term, "the laser eye effect," to describe the discomfort he experiences when someone looks him in the eye for any period of time, a problem for many people with Asperger's.
The three young people, typical of their peers elsewhere in so many ways, may have difficulty processing what people say to them, knowing how much to tell others and when to say it, and controlling thoughts that can overwhelm them. They may hear, see, feel or taste things more sensitively than others, leading to sensory overload. Their different behaviors can easily make them targets for bullying, leading to feelings of isolation and worthlessness.
But we also learn that Noah has a remarkable ear and is able to sing in a way his halting speech does not allow him to express himself - and with a talent few of us could match. He usually gets A's in school without studying because of his perfect memory. Annie can recall the lines and songs from movies perfectly and Jeff loves to perform Shakespeare. Sensory sensitivities have their flip side: Annie has nearly perfect pitch as well and sees many things quickly. People with Asperger's Syndrome have the ability to focus on things they are passionate about, we learn, and this has allowed Annie to be highly creative. The same challenge that has led Jeff to set an egg timer so he can self-limit his computer time allows him the focus to compose poetry. With their vignettes interspersed, and in often poignant and non-clinical terms, each of these young people offers a deeper understanding of what living with Asperger's really means.
The film was created to address the needs of individuals who are newly diagnosed; those with a diagnosis who could be helped by having the challenges and strengths reiterated; and family, peers, teachers and employers of those with Asperger's, according to Wolff. In fact, it would be a perfect addition to the diversity shelf at any school or library, offering insight into differently-abled people. It can be viewed on an individual basis, in a classroom or other setting with a facilitator using the accompanying discussion guide, or in a group setting without a facilitator, said Wolff.
The film broaches a highly sensitive subject at the end: when people with Asperger's should tell others about their disorder. The nature of the relationship and consideration of the possible outcomes are discussed.
Auditions
Wolff had wanted to use three former students from the school, which serves young people up to the age of 12. Annie had been at the school and Wolff had stayed in touch with her parents. When Wolff learned about the extent to which Annie was being bullied, she said "it was the final piece that motivated me." Noah is a family friend who Wolff has known socially for much of his life. Three years ago, after Wolff was interviewed by the Poughkeepsie Journal as she was starting the film, Jeff's mother read the article and called to urge her to include a college-level student. "We interviewed each other and both passed the interview," she said.
Wolff auditioned students for the film. "I didn't just want special talented individuals; they had to be able to articulate it on camera," she said. "It is difficult for people with Asperger's Syndrome to...get into the perspective of another person and realize you don't know everything they do. They also had to be able to speak with a camera pointing directing at them and explain their situation so another person could understand it. I realized that's why this hadn't been done before."
"What I wanted for our DVD was to have other people see it and care about these people," said Wolff. "The feedback I've gotten, which really makes me feel good, is that when people see this DVD, they come away liking these individuals. The word courageous comes to mind," she said referring to one of the most frequently heard responses. "That is exactly what I had in mind."
"From my experience and the experiences of other people who have seen it, the film is unique," said Kelly McMullen, head of the Local Government Unit Program Support for Adult Services at Ulster County Mental Health. McMullen was the local government staff representative at a committee meeting of the County Legislature on October 14 when the film was screened before 16 representatives from ten different agencies. The response was "completely positive," she said.
"So often, the focus is on the weaknesses and challenges; this film does such a beautiful job of talking about the challenges and then goes on to talk about the positives so well that it will be very empowering," said McMullen. "It is also very accessible. To explain what it is like to have Asperger's Syndrome in lay terms will make it accessible to family and friends as well as people with Asperger's, professional people without [specialized] training, and peers."
The film is a local effort. Filmed by Tobe Carey of Willow Mixed Media, its funders included The Daniel Jordan Fiddle Foundation, The Hudson Foundation for Youth Health, Inc., and the Michael & Gertrude Hancouski Foundation as well as Wolff's mother, Ruth Wolff. Wolff and Nofer donated their time.
The film will be available through the Mid-Hudson Library System and can be purchased for under $50 - the exact price has not yet been determined - from The Center For Spectrum Services, (845) 336-2616, extension 116.++
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