University's program puts autistic students on path to independence
Nick Pusateri drapes himself across a couch in a bunker-like room in the basement of his apartment building at Mercyhurst University in Erie.
His arms, legs and shoulders bend around one another as if hinged on extra joints. His neatly cropped, reddish-brown hair lies forward, toward his square-rimmed glasses. Pusateri, 22, stares into the Greek mythology book, his face impassive, and his voracious mind begins to feast.
When he was 2, doctors diagnosed Pusateri of Sewickley with autism, a spectrum of disorders characterized by social impairment and communication problems. He's not intellectually impaired; his professors say he's among their brightest students. He just lacks an intuitive understanding of the unconscious gestures, invisible boundaries and tiny signals that weave into our social fabric.
But he's learning.
Schools such as Mercyhurst are developing programs to prepare an exploding population of autistic students such as Pusateri to enter the work force and contribute their sometimes astonishing intellectual abilities.
"We've never seen something that he wanted to master that he couldn't," said Pusateri's mother, Dr. Dorothy Pusateri, an internist.
Nick Pusateri memorized the code on his library card at 13, once drew a detailed map of Sewickley -- including architectural and historical highlights -- from memory, taught himself the history of the Mormon church and scored higher than 600 on the math section of his SAT college entrance exam without ever taking an algebra class. The average score for male students in 2008 was 533.
"He intuitively figured out the answers" as he worked his way through the test, said Dianne Rogers, director of Mercyhurst's Learning Differences program.
The Asperger Initiative at Mercyhurst -- Asperger's syndrome is a high-function disorder on the autism spectrum -- began in 2008, and is among the country's most comprehensive. Young Pusateri, a senior majoring in history and anthropology, has a 3.48 grade-point average and is on track to become one of its first graduates this year.
Pusateri chose history, he said, because he's "pretty much interested in every subject imaginable," and history seemed to cover the broadest range.
He speaks with a uniform cadence and inflection, regardless of the subject, and when he stands still, it's usually turned to the side, his spine and legs relaxed into an "S" shape.
When Mercyhurst faculty began planning the program about seven years ago, "there was really no model. We had to ... create one," Rogers said.
"We didn't want it to be like a clinic. We wanted it to be a real college experience," she said.
Some students in the program are hypersensitive to sound, touch, lights, taste. Loud noises can feel like a dentist's drill nicking a nerve.
The thought of social interaction can paralyze them. Some students pace in front of a professor's door for an hour, repeatedly rehearsing a simple conversation. Two roommates at Mercyhurst spent two months living together without saying a word to each other inside their apartment.
Pusateri avoided the personal connections other people forge in college. He doesn't make close friends and isn't romantically involved. He said he probably won't keep in touch with anyone after he leaves Mercyhurst. That's just how he is, he said.
"You get over the fact that your kid doesn't have friends, because you realize he's just very happy the way he is. It's been a gift that he's content," Dorothy Pusateri said.
Mercyhurst's program begins with a summer course called Foundations, where high school students, usually in the summer after their junior year, take college courses and live on campus. By the program's fourth summer, word spread, and the response was overwhelming.
"With a $400 advertising budget ... we had 200 inquiries," but only enough funding for 25 slots, Rogers said. In the years since, administrators have dialed back the supervision after finding the students were more capable -- and wanted more independence -- than they initially thought.
Push for social education
The number of adults diagnosed with autism in Pennsylvania is expected to rise from fewer than 4,000 in 2010 to nearly 20,000 by 2020, according to a state study released in 2009. That's attributed to a rapid increase in the number of diagnoses, beginning about 20 years ago, thanks to a greater understanding of autism.
The first wave of that population is reaching adulthood. The number of autistic students registered with the University of Pittsburgh's Office of Disability Resources and Services rose from one or two five years ago to about 50 now, said director Lynette Van Slyke.
If they don't learn social skills, most people with autism flounder, according to a study the state Department of Public Welfare released Thursday. It found more than two-thirds of adults with autism are unemployed, and just 6 percent are employed full time.
Because of their lost productivity and the cost of adult care, the lifetime "societal cost" of a person with autism is $3.2 million, according to a 2007 study in the Archives of Pediatrics and Adolescent Medicine.
Dorothy Pusateri argues it's much cheaper provide social education for people with autism.
Because of how his mind works, her son "is incapable of being manipulative or deceitful. He doesn't aspire to take away your job, my job or anybody else's job," she said. "Make him a tax-paying member of society rather than someone who's dependent on someone else for the rest of their life."
An 'opportunity to shine'
Programs that utilize an autistic person's academic prowess can allow them to blossom. In such settings, their abilities define them rather than their autism, and that allows them to interact with peers with less fear of being ostracized, Mercyhurst's Rogers said.
"When they're in high school, they're bullied, picked on. When they have the opportunity to shine intellectually, it does translate into social skills," Rogers said.
In Nick Pusateri's classes, professors say he draws on his voluminous reading and connects events and facts in ways that sometimes send his teachers back to the books once class is over. He rarely hesitates to answer a question because he harbors no fear of how he'll sound to his peers, said Chris Magoc, chairman of the history department.
Mercyhurst's program, which costs about $4,000 a year above tuition, includes social tutoring and the option of not having a roommate, but pushes students toward self-sufficiency. Students, with varying levels of monitoring, become responsible for their own food and medication -- often for the first time -- and must adhere to the same code of conduct as every other student.
Pusateri spent an uncomfortable seven weeks living in a tent in the New Mexico desert on an archaeology dig -- something his parents could scarcely imagine was possible a few years ago. The experience helped him settle on library sciences as a career, and he has been accepted into every graduate program to which he's applied, including Drexel University and Indiana University, in Bloomington, Ind., his top choices.
It's a fitting pursuit, his mother said. Nick Pusateri made weekly trips to the local library when he was growing up and stayed in the campus library so late so often during his first two years at Mercyhurst that library staff often checked the building for him before locking up at night.
"He lives with two other guys on the spectrum. He does his own cooking, his own laundry, his own shopping," Dorothy Pusateri said. "If you'd have said, when he was a freshman or sophomore in high school, 'Can he do that?' I would've said, 'Nope. That's not in the realm of possibility.' "
Nick Pusateri worked as a mentor this summer at Mercyhurst's Foundations program -- the same one he attended as a prospective student. He worked with the newcomers through their outbursts, awkwardness and uncertainty.
"It was kind of like a reflection. I saw myself," he said.
Pusateri's parents, Dorothy and David, take pride in their son's independence, but the old worries return. Graduate school will require more of Nick, and will take him farther from home. But for the first time, the young man's parents are not the only ones looking ahead.
"I care more about my future than when I started out," Nick Pusateri said.
He struggles to say how that happened.
"It's really hard to describe as a basic pattern, or a route of progression. It's very difficult to put this in perspective," he said.
Dorothy Pusateri concentrates on what's next.
"Your heart is in your throat." She hopes for the best, and listens to the voice telling her: "Just let him go."