By Abigail Sullivan Moore, The New York Times
Valerie Kaplan has an aptitude for math, and scored a perfect 1600 on her SAT. When her high school classmates applauded the announcement at lunch, she was pleased. But less obvious signals - a raised eyebrow or impatient glance at a watch - elude her. In an advanced course at Carnegie Mellon called “Building Virtual Worlds,” that problem caused classmates to sideline her in group projects. And during a critical meeting to win approval for her customized major, electronic art, she intently circled the freckles on her arm with a marker.
Miss Kaplan's behavioral quirks are agonizingly familiar to students with an autism spectrum disorder. Simply put, their brains are wired differently.
Children with classic autism have language delays or deficits and difficulty relating to others; they display rigid, often obsessive behaviors; deviation from routine disturbs them. Some are mentally retarded. Those with milder conditions on the spectrum - Asperger's is one of them - exhibit some or all of these characteristics to lesser degrees. But Asperger's is also distinguished by average or aboveaverage intelligence, an early acuity with language and singular passions - Miss Kaplan, for example, has absorbed every detail of an animated 90's television series called “ReBoot.” People like Miss Kaplan have a disability, but to others they can seem merely gifted, or difficult, or odd.
Of course, high-functioning people on the spectrum have long attended college. Tony Attwood, a psychologist and author of “The Complete Guide to Asperger's Syndrome,” tells of trying to spot the professor with Asperger's when he's on the lecture circuit. That is, unless Dr. Attwood is at an engineering school, in which case he tries to spot the professors who don't have Asperger's.
A top expert estimates that one in every 150 children has some level of spectrum disorder, a proportion believed to be rising steeply. With earlier and better intervention, more of these children are considering college, and parents, who have advanced them through each grade with intensive therapies and unrelenting advocacy, are clamoring for the support services to make that possible.
Finding suitable colleges for such students was a topic at the national conference of the National Association for College Admission Counseling in October. Last March, 89 college administrators from across the country gathered to learn about support strategies at a conference sponsored by the University of Connecticut School of Law and the Yale Child Study Center. The director of the center, Dr. Fred Volkmar, helped define autism and Asperger's for the American Psychiatric Association in the early 90's. “Twenty- five years ago,” he says, “I would have been stunned to learn that I was going to put together a conference on col leges for these kids. Twenty-five years ago, the stereotype view was that they were not very bright and not college material.”
His conference is further evidence of changes already rippling across campuses as colleges scramble to figure out how to accommodate this new, growing population of disabled students.
Community colleges are particularly unsettled. Scores of students are turning up, hesitant about their ability to handle four years of college. “Colleges call us all the time in a panic, and the calls are increasing,” says Lorraine E. Wolf, clinical director of disability services at Boston University and a consultant on the topic. “One college had 20 students coming. It was a technical college in New Mexico.”
Unable to navigate social intricacies, many such students once decided to forego college; or, isolated and depressed, they left before graduating. They bring a host of tricky issues to classrooms, dorms and the dating scene. “I can't emphasize how difficult college is for these kids,” says Dania Jekel, executive director of the Asperger's Association of New England. “Many are going to college and they really aren't ready. We've had cases where a parent hasn't known for an entire semester that the kid hasn't attended class and is flunking every class.”
Ms. Jekel worries about exposing inherently naïve students, who are as sexual as the next college student, to the complexities of dating. Women on the spectrum are especially vulnerable sexually and emotionally, since they have problems deciphering intentions. Men are at risk, too, misreading clear signals of rejection (“I'm busy”); instead, they might pursue a romance until a confrontation results.
Some assume conventional learning-disability programs will do for such students. But that's a mistake, experts say. Students on the spectrum need help chopping course loads into manageable bites. They need to learn how to act appropriately in class - correcting professors or asking too many questions are common gaffes. They also need support with ticklish social issues like roommates who complain they are too messy or who lock them out when a date stays overnight.
“That's a little bit different from what administrators normally do,” says Richard Allegra, director of professional development for the Association on Higher Education and Disability. “If a blind student needs books in Braille, they know how to do that.”
Most advisers just don't have the training or the time to shepherd students with cognitive disabilities. One student at the Massachusetts Institute of Technology tells of being assigned, because of a family connection, to a freshman adviser whose son had Asperger's. “He met with me weekly,” says the student, Richard, who describes his Asperger's as mild and asked that his last name be omitted for fear of being stigmatized. “It helped keep me on track,” he says. “He would just light a fire under you once in a while.” Sophomore year he had a different adviser, one who was not personally invested. Meetings dwindled to monthly or less. Richard's grades dropped as he stayed up late into the night roaming the Internet and procrastinating. “I was just not getting the work done,” he says.
Colleges are devising programs that try to integrate students on the spectrum into the academic and social fabric of the campus. The Essex campus of the Community College of Baltimore County, in a joint program with a state agency and a local school, has hired a special-education teacher to help students organize their time and assignments and improve the skills that are second nature to most, like how much space goes between two people in a conversation or how to make gentle eye contact.
At Keene State College, in New Hampshire, fellow students act as “social navigators.” Their assignment: change their charges' “outsider” status by introducing them to their friends. The mentors get $10 an hour (and sometimes course credit in psychology) by helping students on the spectrum make small talk, date and get consent at every level of romantic advancement. For example, says Larry Welkowitz, who helped create the program: “Would it be O.K. if I asked you out on a date?” “Would it be O.K. if I kissed you?” Some 50 undergraduates have participated in the program, which Professor Welkowitz calls “the single best intervention _ I just know it because of how I have seen their lives change.” In turn, he says, the mentors develop new understanding. “We're learning about ourselves,” Professor Welkowitz says. “A lot of us have a dash of autism.”
At Marshall University, the West Virginia Autism Training Center operates a program in which graduate students work daily with students with Asperger's, reviewing assignments, helping with time management and teaching classroom etiquette. They take the students on field trips to Wal-Mart, to restaurants and to the movie theater to let them practice social skills. Bottom line for parents: $6,200 a year.
Colleges are legally required to ensure equal opportunity for academically qualified students. Accepted adjustments include note-takers, extra time for tests (often in distraction-free settings), and single dorm rooms for students for whom normal noise or the flicker of a fluorescent light amounts to sensory overload. Social skills training, however, is assistance of a personal nature. “It's very much parallel to what we've seen happen with attention deficit disorder and some learning disabilities,” says Ruth Bork, dean of the Disability Resource Center at Northeastern University in Boston. “It's above and beyond what's considered to be appropriate support at the college level.”
Complicating the situation is a scarcity of data on best practices in a college environment. Jane Thierfeld Brown, director of student support services at the University of Connecticut School of Law, is helping to create a pilot program for the University of Minnesota and Boston University that will assess its own success rate. “Once we can prove the program increases the students' graduation and retention rates,” she says, “it can be replicated at other colleges.”
Lisa King, a disability specialist with the Minnesota program, is working now with eight students. She recalls one who was so unnerved by the crowds of strangers at the dining halls that he subsisted largely on junk food from vending machines. Though hungry and sick of chips and pop, he didn't change his behavior. Eventually his mother called Mrs. King, who walked the boy through a series of trips to the university food court. The first foray was over spring break. “There was not a lot of activity and it felt nice,” he says now. “It was good to eat an actual good meal.” Successful trips followed during busier times. He also got help figuring out the bus route from home and around campus. “It was a matter of knowing where it stops and how often it comes,” he says. “Now I do it myself. It makes me feel independent. All I need is a run-through.”
Mrs. King sees these interventions as “the minimum that we can do” for academically qualified students. Musing, she takes it a step further: “We would provide an interpreter to a hard-of-hearing person. Why don't we provide an interpreter for somebody with Asperger's?” And that's not far from what some parents are seeking. One mother wanted her son to have 24/7 access to all staff and faculty, says Barbara Roberts, manager of M.I.T.'s disability services; the request was denied. Families of more capable students hire coaches - psychologists, speech therapists, specialed teachers and graduate students - for fees ranging from $30 to $100 an hour.
Because of her mother's perseverance, Miss Kaplan spent her last two years at Carnegie Mellon living near campus with a coach, who helped her organize her work, buy groceries, keep her room clean. “It was the answer to a prayer,” says her mother, Jan Kaplan, who watched her daughter flounder during sophomore year, trying to pick a major. Miss Kaplan eventually came home for a year. Testing led to a diagnosis of Asperger's.
The coach, Carolyn K. Hare, a former special-education teacher for autistic students, went on to create Aheadd (Achieving in Higher Education With Autism/ Developmental Disabilities), which provides services at the University of Pittsburgh and, beginning in the spring, at George Mason in Arlington, Va. This fall at Carnegie Mellon, Ms. Hare is working with seven students. Aheadd charges $7,000 a year, with some need-based scholarships available through Carnegie Mellon.
“The Asperger's population is much bigger than we think it is,” according to Larry Powell, manager of disability services at Carnegie Mellon. “But students aren't disclosing that. It's kind of like, if you build it they will come. If we could put together systems that would adequately support these students, word would get around and more students would disclose it and would come. One of my issues is that I am an office of one with 264 students.”
Miss Kaplan graduated from Carnegie Mellon in 2005. Her experience with “Building Virtual Worlds” led her to a new strategy for social interactions. Randy Pausch, the course's teacher, noticed what Miss Kaplan did not: that her classmates were working around her instead of with her on group assignments. When he found out why, he encouraged her to explain her cognitive difficulties to her teammates and ask them to be direct about what they wanted her to do. Dr. Pausch says the results were beneficial not just to Miss Kaplan but to the others. “They found a way to work with someone who opened up to them about something that was very embarrassing,” he says. “Once she puts that on the table, what else can anyone feel embarrassed about having to divulge?”
Now managing a Games Unlimited store in Pittsburgh, Miss Kaplan still uses his method. “Tell me flat out if I need to do something different,” she says to her supervisor. Her career goal is to make video games or work for DreamWorks (but only after “Shrek 3” is released - she wants to be surprised).
Though no longer a student, Miss Kaplan belongs to a student organization called the K.G.B., a swipe at the Cold War secret police. The acronym does not, she says, stand for “Keep Geeks Busy.” An on-campus variation of capture the flag is one of its signature activities. Surrounded by a self-described “eccentric bunch of nerds, geeks, freaks, visionaries, outcasts,” Miss Kaplan says, she feels perfectly comfortable.
This article originally appeared in the New York Times on Nov. 5, 2006. Copyright © 2006 by The New York Times Co. Reprinted with permission.