For teens across America, college is one of the major stepping-stones to independence, akin to getting a driver’s license or moving into your own place. Away from the constant supervision parents, young adults get their first taste of the “real world,” where they can finally take charge of their lives.
But that wasn’t the case with Nils Skudra when he entered UC Merced in 2010. His mother, Renee Skudra, went with him. And when he returned to the Bay Area to transfer to UC Berkeley, she followed.
Nils is 22 now, but the idea of his living on his own has not yet become a serious consideration for Renee. Nils has Asperger syndrome, a form of high-functioning autism characterized by significant social and nonverbal communication challenges, which makes it extremely difficult to live alone. Those with Asperger’s tend to have difficulty reading facial expressions and picking up on social cues. Their speech is repetitive, almost mechanical, and conversations with others can be one-sided.
Everyday life can be a struggle for autistic people and their families, and the experience has been heavily documented in movies, television shows and news articles. But the bulk of these exposés focus on children with autism, not young adults like Nils.
Seeking to change this, Renee has set out to make a documentary on her son’s story.
Motivation for the project came from several places, according to Renee. Ignorance of those with autism, even at a world-class institution like UC Berkeley, was perhaps the biggest source.
“There is a tremendous amount of ignorance about autism, even in a highly literate and cosmopolitan environment like the Bay Area,” said Renee. Many of his professors have admitted to knowing nothing about Asperger’s Syndrome and many other people in Berkeley have said to me, ‘Oh, he’s retarded then?’”
Teasing was — and still is — a constant struggle. Nils’ social impairments make it difficult for him to interact with his peers, according to his mother. He thinks very literally, Renee said, so idioms and sarcasm, mainstays in casual conversation, are hard for him to understand.
The misconception about people with Asperger’s often distracts people from recognizing the value people like Nil’s have to offer society, Renee believes. Nils has straight A’s at Cal and is on five merit-based scholarships. Renee said he actively participates in classes and maintains a wealth of knowledge about history, which he often employs to his professors’ delight. Once, in one of his classes, his instructor exasperatingly asked if anyone besides Nils could contribute to the discussion, a testament to his intellectual enthusiasm.
Those with Asperger’s also possess incredible concentration and verbal skills that are often more advanced than their peers’. Indeed, it was Nils’ use of complex vocabulary at a young age that first alerted Renee to the possibility of her son being on the autistic spectrum.
“The teachers at school were telling me that he uses really big words and uses them appropriately,” Renee said. “And when we were at a park one day with my friends who have children around the same age [as Nils], and they were only monosyllabic… and he was using four-syllable words.”
At age 2½, he had picked up the word “extrapolate.” By age 4, a neurologist had diagnosed him with Asperger’s.
Renee was also motivated to produce the documentary by what she perceives as a lack of community for people like Nils. Finding others who can appreciate and understand Nils has been not been easy. UC Berkeley offers several channels of support, including programs at the Ed Roberts Campus, but connecting with other students with Asperger’s and their families is hindered by confidentiality laws, Renee said.
But Nils’ story is not unique. The Skudras personally know at least 10 other college students with Asperger’s. And across the country, diagnoses of children with autism have climbed dramatically in recent decades. In 2008, the Centers for Disease Control reported that one in 88 American children had autism. Two years later, that statistic jumped 30 percent to one in 68.
Renee knew that telling the story of this relatively hidden, but growing, group would require some help. She reached out to filmmaker Tracey Quezada, who has spent years documenting the stories of illegal immigrants, survivors of child sexual abuse and other groups frequently pushed to the fringes of society.
After a phone call with Renee, Quezada was on board. She knows several people with autism, including her teenage cousin and 35-year-old friend who is just now moving out of her parents’ place. Her friend frequently attends open houses she finds on Craigslist just to practice how to interact with landlords. Seeing their struggles, Quezada frequently wonders how society will accommodate people like them.
“Are we going to change the way we work? My friend [with Asperger’s] can’t do a 9 to 5,” Quezada said. “I look at my cousin who is graduating high school and going to go to college and, let’s say in five years from now, what’s going to happen in the workplace? So it was kind of magical to receive a phone call from [Renee].”
Quezada noted that many documentaries about autistic children often end up focusing on the parents, who many people may find more relatable. But for this film, she wants Nils to be the main focus so viewers get a sense of who he is beyond his condition.
And they may be surprised that, aside from the social irregularities, Nils is a young man like countless others: he plays the piano and participates in local theater productions. He likes to surf the internet, regularly goes on YouTube and enjoys watching movies. The 1993 epic, Gettysberg, is his favorite film. When he’s older, he hopes to make a profession out of his interests, either as a history teacher or theater actor.
Renee said he also has a deep love for animals, particularly his late dog, a Bichon Frise named Beauregard, whom he frequently includes in his Facebook profile pictures. When Beau died, Nils was devastated, and since then he’s been tirelessly fundraising to cover the costs of his dog’s hospital bills. He is also looking for a replacement of the same breed, which they haven’t managed to find at any shelters.
By showing this side of Nils — in tandem with the very real struggles he faces as a college student with autism — both Renee and Quezada hope the film will lead people to consider society’s responsibility in helping people like him thrive. The question will only loom larger as more and more people with high-functioning autism enter the real world.
“Believe me, everyone is going to be affected in the end,” Renee said.
While the project is still in its infancy, several advocacy organizations, including Assisted Living and Autism Speaks, have already expressed interested in participating. But funding has been a major obstacle. An estimated $20,000 is needed to cover the filming costs, although Quezada said that they could raise a smaller amount, shoot a short segment and then use that to attract more donors.
Renee plans to acquire seed funding through a crowdfunding portal like Kickstarter, although she has asked for assistance in setting up an account. Anyone interested in contributing to the project can email Renee at renees52@aol.com
Drew Jaffe is a summer intern at Berkeleyside. He grew up in the East Bay and now attends Occidental College in Los Angeles. He can be reached at djaffe@oxy.edu
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