Autism diagnoses are booming: More than 1 percent of all children are now estimated to be somewhere on the spectrum for the developmental disorder, according to the Centers for Disease Control. In response, K–12 programs have set up more early learning interventions to help students with autism spectrum disorder master the same curricula as their classmates, and those students are graduating high school with the diplomas to prove it.
After graduation, though, the transition to university life has proven more challenging. In order to succeed, researchers say, many students on the autism spectrum need extra support such as organizational coaching, social interventions, and counseling in workplace guidelines, programs that traditionally haven’t been offered at the college level.
“You need to have a specifically defined program for kids on the spectrum,” says Mitch Nagler, the director of the Bridges to Adelphi program. “Other than that, it’s going to be hard for them to be successful, and they’ll most often slip through the cracks.”
More and more tristate-area colleges are beginning to offer these kinds of programs. At Fairleigh Dickinson in New Jersey, students with Austism Spectrum Disorder (ASD) are assigned both an academic coach and a counselor; at Adelphi University on Long Island and Pace University in the city, students meet with academic strategists four times a week; and at Rutgers in New Jersey, every student receives two peer mentors. Other schools with specialized ASD programs include Borough of Manhattan Community College, Brooklyn College, College of Staten Island, Kingsborough Community College, LaGuardia Community College, and New York Institute of Technology. All say they seek to help students make the best of their higher-education experiences by providing supports to help students thrive in the classroom, on campus, and beyond.
“I figured I needed all the help I could get,” says Raphael, a senior psychology major who is enrolled in the autism support program at Rutgers’s Central Campus in New Brunswick and Piscataway, and who asked to be identified only by his middle name. Rutgers’s program, he says, “has helped to make me more comfortable with an independent, everyday routine, as well as a weekly work schedule.”
Because autism is such a broad term, it can be difficult to pin down. Some people with autism are nonverbal and have limited cognitive abilities, while others have IQs in the genius range. Clinicians refer to a “spectrum” because the term includes a range of individual disorders.
“There’s a famous saying: ‘If you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum,'” says Rutgers autism support coordinator Pam Lubbers.
People with ASD do tend to share a few key traits. Most find social interaction difficult. Many have difficulties with language, though a subset of people with the form of high-functioning ASD formerly classified as Asperger syndrome (a diagnosis that was officially merged into ASD last year) are known for their verbal facility. People with autism also can have trouble with executive functioning, the ability to organize and plan tasks.
It’s a collection of symptoms that can lead students with autism to struggle academically, according to researchers and autism advocates. They may have difficulty managing time and may not know how to break large tasks down into smaller, manageable steps — key skills in approaching college work.
Stephen Shore, a professor of special education and autism expert at Adelphi who is himself on the spectrum, recalls a physics of music class that he took during his own college days at the University of Massachusetts in the early 1980s, when little help was available for students with ASD. “There was this long-term project, and it sounded pretty exciting, but I just didn’t have the executive functioning to get it done, so I ended up dropping the class,” he says. Shore, who obtained degrees in accounting and music education before earning his doctorate in special education, recalls his college years fondly — “musicians and artists in general are expected to be a little bit different and weird” — but says he would have benefited from executive-functioning assistance.
To help students improve such skills, many of the new college programs include individual academic coaching. Some start students with a reduced courseload so they don’t have as many tasks to juggle. “We don’t encourage our students to take five classes each semester,” says Mary Riggs Cohen, director of Pace’s program.
Students with autism can also struggle to pick up on tone of voice and facial expressions, and may not be fluent in the give and take of social situations. Many people with ASD are encyclopedically knowledgeable about certain subjects, and if that subject comes up in class, a student might monopolize the class discussion or interrupt the instructor.
“It takes more effort than normal for me to be social,” says Raphael. “I am capable of doing it, but it is sometimes mentally taxing.”
Dating can present another social problem on campus. “I’ve had a number who’ve been thrown out for stalking, and they had no idea they were even doing it,” says Lynda Geller, the founder of Spectrum Services, a cooperative of practices in New York City that specialize in Asperger’s and similar conditions. In an effort to get to know someone, a person on the spectrum might engage in behaviors that others might consider harassment — texting dozens of times, for instance — without realizing that it could be perceived that way.
Dr. Fred Volkmar, an autism researcher and psychiatrist who is the director of the Child Study Center at the Yale University School of Medicine, has found that people with high-functioning ASD miss about 90 percent of what happens in a social interaction. “These kids are setups for bullying,” he says.
Lori Shery, the founder of the group ASPEN, a New Jersey–based advocacy organization for people on the spectrum and their families, tells of a male college student with Asperger’s who went to a party, left for another party, then returned to the first at the same time as two female students. When they arrived, the women complained to one of the other men that the student was acting strange. The man asked him to step outside. The student, not understanding the subtext of that phrase, followed him and was beaten by both the man and the host while other students watched. He ended up in an emergency room.
To avert such misunderstandings, program directors are working to raise awareness about autism on their campuses. Two years ago, for example, CUNY launched Project REACH, an initiative with the twin goals of developing programs for students on the spectrum and teaching the larger university community about autism.
Most programs include individual counseling, and many also offer group counseling, seminars on topics like dating, and social activities. Lubbers recalls a student who attended his first meeting of one of Rutgers’s clubs for anime, which tends to be popular with people on the spectrum: “He called his parents and said, ‘For the first time in my life, I walked into a room, and I met a whole bunch of people like me.'”
Another key is peer mentoring, which can offer students with ASD a way to build relationships. “Sometimes people on the autism spectrum need to have interpreters of the neurotypical world,” explains Ernst VanBergeijk, executive director of the Vocational Independence Program at New York Institute of Technology, which offers life-skills training as well as a choice of a vocational track or a college-preparation track with credit-bearing courses.
Because of a lack of government funding for studies on adults, research on autism vanishes once people with ASD pass college age. Anticipating that students with ASD may have particular difficulty transferring the social skills they’ve acquired in college to a job, many programs offer seminars on workplace social guidelines; at Adelphi, Nagler has developed ongoing relationships with organizations that help people with ASD find and keep jobs.
Experts recommend that parents of students with ASD should start preparing them for college years in advance. VanBergeijk recommends summer camp or summer bridge programs, like NYIT’s, where students can experience staying away from home — something that parents of kids on the spectrum may be less likely to consider because the adjustment can be difficult. Children should also get jobs, even if it’s just volunteering a few hours a week, says Yale professor Jane Thierfeld Brown, co-director of the group College Autism Spectrum and the author of three books about college students with autism. (NYIT’s summer program includes jobs that carry stipends, which helps students learn budgeting skills.)
In choosing a college, Shery and Brown say distance from home is an important factor; even the most independent students with ASD can benefit from being near their families for the first year or two. Parents also need to consider a student’s abilities: Some people with ASD may be better off starting with a non-college residential program such as Chapel Haven in Connecticut that focuses mainly on life skills. Costs of these can be pricey, however: Whereas most college ASD programs cost up to $8,000 and CUNY’s are free with tuition, Chapel Haven’s is closer to $65,000 a year.
Regardless of which path students choose, experts and program directors are heartened by their increasing numbers, and their increasing success.
“For this generation, people on the spectrum are going to be your neighbors and parents of their kids’ friends,” Brown said. “They’re going to be people that you meet at the dry cleaner. They may be the person who fixes your computer or does your mortgage. They’re part of society.”