When Jon Dorfman was diagnosed with Asperger's syndrome at 9, his parents weren't thinking about their son's future. They were just trying to get through the next tantrum.
It was 1998. Asperger's syndrome, a developmental disorder on the high-functioning end of the autism spectrum, had been listed as a mental illness for only four years. Even as a child - Dorfman could read multisyllabic medical terms at 4, but had violent meltdowns in shopping malls - he knew the diagnosis was not good news. "Whoever heard of anyone successful who had autism?" he recalls thinking.
This month, Dorfman, now 22, will graduate from St. Joseph's University. He's a film major, a former NBC intern, and a paid mentor at the school's Kinney Center for Autism Education and Support.
He's also part of the newest wave of diversity to reach college campuses. As a generation of young adults - the first to be diagnosed with Asperger's as children - comes of age, it is demolishing stereotypes about its condition and prompting universities to respond to its needs.
The Centers for Disease Control and Prevention estimates that autism spectrum disorders occur in about one of every 110 children; that rate jumped 57 percent from 2002 to 2006, a rise doctors attribute to higher incidence and increased awareness.
"Colleges are seeing more people with autism spectrum disorders, the kinds of people who, in the past, wouldn't have gone on to college," says Felicia Hurewitz, director of the Autism Support Program at Drexel University. "We have a lot of diversity. Neurodiversity is the newest."
Like any college student with a documented disability, those with Asperger's are eligible for "accommodations" such as copies of lecture notes, extended time on tests, or a quieter test environment.
But this group often needs more. Those with the disorder - typically characterized by high intelligence and a passionate, even obsessive interest in particular topics - struggle with organizing and setting priorities. "Students with Asperger's . . . are the kids who are playing World of Warcraft until all hours," says Peggy Chapman, coordinator of Y.A.L.E. School Cherry Hill, which helps high schoolers with autism go to college or get a job. "We have students who are extremely bright washing out of college because they lack the social and organizational skills."
People with Asperger's have difficulty reading social cues; they may raise their hands constantly in class, monopolize a seminar, or ignore a listener's signals that it's time to end a conversation.
And after 12 years of having parents and teachers help them in structured special-needs or public schools, they may flounder in the relative openness of college.
Many schools are offering a range of stepping-stones. At Community College of Philadelphia, where the number of self-identified students with Asperger's has risen from three to 25 in the last four years, the Center on Disability runs a weekly discussion group for those with autism spectrum disorders.
At Drexel, where president John Fry recently announced the creation of an autism institute to study the disease from a public-health standpoint, peer mentors help students with Asperger's plan their study schedules and manage competing demands. And at Rutgers University's main campus, students in the Asperger's College Program can get time-management coaching, a guided walk-through of their daily routine, or a supportive third person to join a meeting with a professor. That program costs $2,500 per semester, on top of tuition.
Then there are groups such as AHEADD (Achieving in Higher Education with Autism/Developmental Disabilities) and College Autism Spectrum, which offer mentoring, counseling, and advocacy on many campuses. Some programs even offer supervised housing, along with nutrition education, stress management, and academic support. Prices for the most intensive services can run up to $72,000 a year.
Dorfman, who graduated from Haverford High School in 2007, chose St. Joseph's partly because staff and students were so welcoming, a far cry from the middle-school classmates who called him "ass-burger."
Still, he was terrified about starting college. He had to learn to manage his temper; after slamming a chair to the floor in vexation during his freshman year - the university put him on probation - Dorfman worked with counselors and never had an outburst like that again.
He's proud of having been trained as a Kinney Center SCHOLAR (Students Committed to Helping Others Learn About Autism). He's also proud of his 14-minute senior thesis film, a story of angst and love called "Queen of Hearts." And although he's not sure what he'll do next - his dream job would be in video production - he's excited to swap his trademark black fedora (the one with the button that reads, "Freeze! I have Asperger and I'm not afraid to use it") for a mortarboard.
"It's a monumental thing to be graduating from college with this disorder. I learned to never give up on myself."
Jane Thierfeld Brown, author of A Professional Guide to Students with Asperger's Syndrome in Higher Education, started telling university administrators more than a decade ago that a wave of students with Asperger's was on its way. "People would say, 'Asparagus - what's that?' "
At Mercyhurst College in Erie, Dianne Rogers, director of the Learning Differences Program, heard Brown's prediction and realized that standard accommodations were not going to be enough. The Asperger Initiative at Mercyhurst (AIM), launched in 2008, now supports 20 students by providing single rooms during freshman year, a weekly group counseling session, and graduate-student mentors who share quiet tables at each meal. The program costs $3,200 a year.
It was the Mercyhurst program that coaxed Dan Pietrasiewicz out of the basement. Ever since graduating from high school near Erie - where classmates bullied him and social interactions confounded him - he'd been holed up in his parents' home, playing video games and avoiding outside contact.
When his cat, Marty - "the only friend I'd ever had" - died, Pietrasiewicz realized he had to make a change. He started Mercyhurst in the fall of 2010 with a handful of goals: to live independently, get decent grades, and celebrate his birthday with someone other than his parents.
Pietrasiewicz soon found a home in the school's animé club, focused on Japanese animation. He did well in computer-programming classes. On his birthday, a friend surprised him with an ice cream cake from Dairy Queen.
For Rogers, having students such as Pietrasiewicz on campus isn't just an accommodation, it's an asset. "Faculty have been fascinated with this population of kids," she says, including one student who had been reading her professor's journal articles since she was 14. "Their contributions are truly unique, and we are happy to be positioning ourselves at the front of this tidal wave."
As a child, Meaghan Flemming Buck used to hide under the table. Now 23, she recently sat in the student center at Lebanon Valley College in Annville, Pa., urging classmates to sign up for an open-mike event during Autism Awareness Week.
She spent most of her early years pretending her Asperger's symptoms - her obsession with aliens, her tendency to startle, her chronic disorganization - didn't exist.
Her mother, Cheryl Flemming-Buck, recalls asking a doctor about her daughter's future. "The attitude was 'don't expect much.' I just couldn't believe that."
As her daughter got older, Flemming-Buck thought Lebanon Valley College might be an ideal place: small, rural, close-knit, with a welcoming attitude for students with all kinds of learning differences.
Now, 25 students with Asperger's attend LVC, says director of disability services Yvonne Foster. "They sign a consent form when they come in, so everybody knows they're here - resident assistants, financial-aid people. And they're phenomenal students. They have raised the level in our classrooms."
At first, Flemming Buck, an elementary education major, struggled: Her room was a mess, and she couldn't manage her study schedule. Now she meets three times a week with an organizational tutor who pencils daily tasks into her planner: Wake up . . . shower . . . write letter of inquiry . . . clean room.
Educators say the next question for students such as Flemming Buck is what happens after college: What supports do they need to land jobs and meaningful careers?
"We've got to think - in higher education and in the broader society - about the next step," says John Bennett, director of disability resources and services at Temple University. "It doesn't end here. It's really just beginning."
Cheryl Flemming-Buck knows that. But for now she's reveling in an achievement she never thought possible. Meaghan's graduation robe is hanging in the family's laundry room in Atco, pressed and ready for Saturday's ceremony. "Every time I see it," says her mother, "I catch my breath."
Resources for Students With Asperger's
St. Joseph's University's Kinney Center is sponsoring a two-day college-bound retreat June 21-22 to give teens with autism spectrum disorders a look at higher education; participants will learn about living away from home, choosing a major, and using social skills on campus. Information: http://kinneyautism.sju.edu
AHEADD (Achieving in Higher Education with Autism/ Developmental Disabilities) provides coaching and mentoring to students, including some at Philadelphia-area campuses. Information: 1-877-243-2331 or www.aheadd.org
Books for students and parents: Developing College Skills in Students with Autism & Asperger's Syndrome, by Sarita Freedman, a California clinical psychologist (Jessica Kingsley Publishers, 2010); and Autism Tomorrow: The Complete Guide to Help Your Child Thrive in the Real World, by Karen Simmons and Bill Davis (Sicoli Group Inc., due out August 2011).