by Maggie Fazeli Fard
Published in Community Life
Winner:
First Place, Responsible Journalism
-2007 NJ Press Association
First Place, Series Writing
-NJ Society of Professional Journalists
ORADELL – It is Thursday, April 12 at the Hackensack Country Club. At the bar, located at one end of a drab but expansive banquet hall, it is around seven o’clock. Two men order what appears to be every variation of martini that the bartender can concoct, a line of nonetheless jovial people growing behind them.
At the other end of the hall, it is precisely 7:04 p.m. A young man, seated alone next to a projector whose blue-white light is distorting his features, is acutely aware of the fact that his presentation should have started four minutes ago. He checks his watch again. Make that five minutes ago.
But he waits, drinking from his bottle of water and eagerly chatting with anyone who takes a seat next to him. He smiles, answers their questions. He is, after all, there to talk to them, be it as a group or one at a time.
Finally, shortly after 7:30 p.m., the young man is introduced. He is Scott Robertson – a Ph.D. student in the information studies and technology program at Penn State; vice president of a non-profit organization geared toward supporting children and adults with autism; one of 1.5 million Americans living with autism today. He is there to talk about “Life as an Adult on the Autism Spectrum: Aspirations, Reflections, and Experiences.”
He describes himself as a “computer geek” who has “trouble smiling for cameras.” But for the roomful of now captivated men, women and children, Robertson is a symbol of hope.
Autism is a complex and widespread developmental disorder that, despite extensive research, remains a mystery to doctors and scientists. There is no known cause, and no cure. A spectrum disorder, symptoms of autism can range from the mild to the severe, with countless shades of gray in between.
It is only in the past decade or so that tests and treatment for autism have been promising. In the 1960s and ‘70s, autism was blamed on mothers who neglected their children, called “Refrigerator Mothers.” A lack of love was presumed the cause of what appeared to be a child’s regression into a private world.
As late as the 1980s, diagnoses were misplaced; Robertson got stuck with the now un-PC label of “neurologically impaired.” He believes that many other children who received such a diagnosis would also have fallen on the autism spectrum.
Robertson, the youngest of three children whose claim to fame is having been born in the same hospital as Derek Jeter, has Asperger’s Syndrome, a disorder that falls on the “high functioning” end of the spectrum. According to Robertson, who has researched autism extensively since his own diagnosis, the majority of children diagnosed today fall in the more functional range. That is not to say life for a high–functioning autistic is without its share of challenges. “I felt like I was on a different planet, a different world,” says Robertson.
As a 5-year-old, he could not go to the grocery store, a veritable amusement park for young children who enjoy knocking bags of cookies into the cart – a form of torture for the parents who have to put everything back on the shelves. “I had such heightened hearing,” he explains. “It was just a bom- bardment of different stimuli.”
The effects extended beyond losing the opportunity to be a snack-happy little boy. In middle school, he lost his best friend to the gifted and talented program. Other kids, and even his gym teacher, teased him relentlessly. His grades plummeted and it reached the point where Robertson, who had always been eager to learn, started to hate school. In seventh grade, his parents, who he says have always been his biggest supporters, transferred him to a private school.
Before long, Robertson’s grades were back up and he even participated in a three-week trip to France. “It was a scary experience,” he recalls. “I already felt like a foreigner. Now I wasn’t just on a different planet – I was in a different dimension. They didn’t have juice!” he exclaims jokingly, a broad smile spreading across his face as he remembers the French penchant for coffee.
“But as the weeks went on, I had the experience of living on my own and just dealing with it. After three weeks, I felt like I could do another two months.”
What changed in three weeks? “It strengthened my ‘interdependence’ skills,” says Robertson. “No one is completely independent. We’re always getting help. What life is about is learning to get help, learning when to ask people for help.”
Still, Robertson was asking for help without knowing what it was he needed help with. It wasn’t until his freshman year of college at Rennselaer Polytechnic Institute that he got his diagnosis. “I took a class called ‘Minds and Machines.’ It sounded cool. I didn’t know it would change my life.”
While reading a book called “Mind Blindness,” Robertson was struck by the feeling that the author was writing about him. He looked up autism on the Internet and suddenly it all came together. There was an explanation for the super power-like hearing that kept him out of supermarkets, the odd movements that he was teased for, the low score on an IQ test, his need for structure, his inability to read body language and facial expressions, even his interest in technology.
“Computers are easy for autistics because there is no auditory or non-verbal component. It makes a lot more sense than things in the ‘real’ world.”
His time at Rennselaer marked a turning point in Robertson’s life. He gained a better understanding of himself, made friends for the first time in almost a decade, and figured out what he wants to do with his life. “I always received a lot of support and I wanted to find a way to pay it forward and help other people out there.”
Today, 26-year-old Robertson is a Ph.D. candidate at Penn State University, studying the use of online information technology to facilitate the transition of an autistic student from a high school to college environment.
He is also the vice president of the Autistic Self-Advocacy Network (ASAN), keynote speaker at the Penn State National Autism Conference and is involved with Autreat, a five-day conference run by adults on the autism spectrum. Autreat attendees wear tags that indicate whether or not they are interested in talking to other people. “We should have those in real life!” he says with a laugh.
Robertson also gives lectures and teaches courses for adults on the spectrum. All in all, his goal is to give America’s autistic youth the self-confidence and the tools to live fulfilling adult lives. “I’m a big believer in teens having mentors, guidance from people who’ve been there,” says Robert-son. “My life has been about learning, not to live on my own but in conjunction with other people, gaining support from my peers and my environment.” To create a supportive environment, Robertson’s tools of choice are e-mail, speed laces (shoelaces that don’t need to be tied) and liquid pencils (the graphite streams out like a pen). “I don’t believe that autism by itself is a disability,” says Robertson.
“I’ve had a lot of challenges. We all go through our own. And sometimes just believing, and having other people believing in me, helped me get through them.”
Tagged: autism, health, new jersey, science