STATEN ISLAND, N.Y. — Richard was one of the brightest kids in his high school class. His parents figured college was the next step, but that dream was nearly cut short in his first semester.
Miscommunication with a professor resulted in an argument over handing in a paper he wasn’t finished with. Richard stormed in and out of the classroom several times, trying to retrieve the paper. The incident left the professor feeling afraid, some students in the room shouting at Richard and college administrators unsure whether to bar him from classes.
Richard is on the autism spectrum. There are ways to manage intense reactions such as his, but — like most people — neither the professor nor the students in that class knew anything about them.
The increase in the number of young people diagnosed with autism in the last 14 years has been staggering — from one in 152 in 2002 to an estimated one in 68 today. Funding and focus for autism have remained centered on helping younger kids cope. Meanwhile, tens of thousands of children like Richard turn 18 every year. (Students in this story all asked to be identified by their first names only.) They are often as smart as or smarter than their peers, but they go to college in far fewer numbers. They are even less likely to go to college than people with most other disabilities.
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Only a few dozen colleges have programs specifically designed to support students with autism, a recent study found. Many of the programs that do exist cost thousands of dollars per semester, on top of tuition. But there are practical and inexpensive methods to help these hundreds of thousands of students navigate the social and academic landmines that stymie them. Failing to help likely consigns them, as adults, to low-wage jobs, dependence on public assistance or ongoing reliance on their parents — who may also be struggling and are unlikely to outlive them.
“REACH helped me, because it made me more confident. It made me understand more what autism was, and that made me more relaxed and more able to participate in class.”
A pilot program on five campuses at the City University of New York, where the number of students who disclosed that they are on the spectrum has more than doubled since 2012, has shown promising results.
Most CUNY students are low-income, and almost 40 percent come from households with incomes below $20,000 a year. The pilot program was implemented at no cost to students, and, for the most part, students participating in it over the last four years have been more likely to stay enrolled, improve their academic performance (grades for 60 percent of the participants at Kingsborough Community College went up) and report increased satisfaction with their social experience.
Faculty who oversee the program, dubbed Project REACH, emphasize that because of the vast differences in the behaviors and abilities of people on the spectrum, there is no one-size-fits-all solution. But the program is built around a combination that works: weekly workshops (which are open to all students with disabilities) and one-on-one peer mentorship seem to meet a lot of students’ needs.
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Nick, a sophomore majoring in psychology, was diagnosed as a little boy with autism and attention deficit disorder. When he was younger he struggled with overwhelming waves of emotion and frustration that sometimes led to screaming and fits of rage that were hard to control. He and his parents chose the College of Staten Island because they heard it was supportive of students on the spectrum.
Nick, 19, had an A average in high school and is now in the college’s honors program, where he currently has a 3.14 GPA. Sitting in the psychology department in a gray T-shirt and blue sweatpants, lightly tapping his foot, he says he still struggles sometimes.
“I know if I could just take a minute out of my day and plan, I’d be so much better. I genuinely get so frustrated with myself,” he said, looking down, his foot-tapping becoming more strenuous and his face contorting, as if he were suddenly awash in that frustration.
He put his head down on the table for a moment, and then looked up, focused on the present once again.
“REACH helped me, because it made me more confident,” he said. “It made me understand more what autism was, and that made me more relaxed and more able to participate in class.”
The group sessions, which simulate an actual class environment, not only teach relevant topics, but also help students work on behaviors that can be problematic in their regular classes, such as being disruptive or not speaking at all.
“You can talk at people all you want about social skills,” said Kristen Gillespie-Lynch, assistant professor of psychology and director of Project REACH at CSI, “but there has to be an element of doing it for people to learn it. … That’s why we have the group classes.”
The workshops vary depending upon student interest and what the faculty think is needed. Topics have included how to use a syllabus, job interviews and resume writing, as well as social skills. Classes have also discussed self-advocacy, including if, when and how to disclose a disability.
“Initially when I wrote the proposal, I thought we would mostly do social skills, but they weren’t interested,” said Stella Woodroffe, director of Access-Ability Services at Kingsborough Community College, laughing. “It sounded too much like therapy. They’d had enough of it. They wanted more college skills and social events.”
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Some classes discuss characteristics of autism itself.
“[A] professor told the class one day to have their eyes open and their mouths zipped. It was confusing. The student’s response was, ‘I don’t have a zipper on my mouth.’ ”
In March, a graduate student teaching a class began with a discussion of “executive functions,” which include planning, organizing your thoughts, and time management — challenging processes for people on the spectrum. About 15 students, most of them male, from half a dozen ethnic backgrounds, plus some of their mentors, looked quizzically at the teacher. Some examined spots on the floor. One talked quietly to himself.
The instructor recognized the confusion and explained that executive function is similar to how a corporate executive has to operate. One young man, who was gripping his pencil with his middle and index fingers wrapped awkwardly around it, his head an inch from the paper, looked up and grinned mischievously. “Unless you’re a Fox executive,” he said. A young woman sitting next to him, who had been completely expressionless since the start of class, suddenly came alive, smiling almost gleefully.
The instructor nodded, without pausing for too long, and moved on to describe how executive functions are related to the process of writing a paper, and how to break that process into smaller steps, to make it less overwhelming.
A few students were silent for the entire class, several spoke when prompted and one would have talked during every silence if the instructor hadn’t gently cut her off.
James said he found the classes extremely valuable in helping to orient him to what was required and available at college. He moved to Staten Island from a homeless shelter in Florida in seventh grade and was mislabeled as “emotionally disturbed.” He finally got out of special education classes as a junior in high school and, earning decent grades, was accepted to the College of Staten Island. But that was almost 20 years ago, when there were few supports; without sufficient funds or any idea of how to manage financial aid, he dropped out.
A state agency advised him to enroll in a clerical certificate program, which he passed. For the next decade or so he held a string of clerical and customer service jobs, his favorite as a security guard at LaGuardia Airport. He knew he needed a college degree, however, to get a job that would pay decently and that he would truly enjoy. He got tuition help from a Catholic charity and, at the age of 39, he will graduate in August with an education degree. He hopes to work with children with disabilities, and recently became a mentor to another student on the spectrum.
“That’s one of the biggest changes and challenges for students with disabilities when they enter college. They have to learn to be effective self-advocates and they may never have learned those skills when they were in high school.”
“I help them to recognize when people are reacting and why, what activities to get involved in, what clubs are welcoming,” said James, sitting in the campus student center before going to a meeting of the A.L.P.H.A. Club, which helps arrange community service projects and social activities on campus.
Barbara Bookman, director of Project REACH at CUNY, said the mentorships allow for an individualized approach, which is particularly helpful for students on the spectrum, who can have a wide range of challenges. She recalled a mentor at La Guardia Community College who developed a dictionary of sorts for one student, who, like many people on the spectrum, understood things very literally and would get confused by some professors’ use of language.
A “professor told the class one day to have their eyes open and their mouths zipped,” said Bookman, who is also director of program relations and professional development at CUNY. “It was confusing. The student’s response was, ‘I don’t have a zipper on my mouth.’ ”
Autism experts say that the peer mentor model is one of the best.
“For a new student in college who’s just really landed on another planet, it’s like, ‘ok, here’s what you do, here’s what you need to know,’ and it’s especially useful if it’s somebody who has autism or is a peer,” said Naomi Angoff Chedd, a therapist at the Center for Autism Spectrum Disorders at Stony Brook University. “Things like, ‘This is how you avoid the construction site, this is how to get a seat near the window, these are the professors who are more understanding or are on the spectrum themselves.’ It’s just practical things that staff may not think of.”
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Ben Cheriyan, 21, is legally blind and not on the autism spectrum, but he participated in Project REACH and then became a mentor. He now helps run the smaller group meetings at CSI, meant for the quieter, less verbal students. He can empathize with what they go through, he said, especially since he was mercilessly bullied in middle school.
He mentored a student last fall who had transferred from York College in Queens (which has no specific autism program) after failing all his classes.
“It was hard to get him to open up at first,” admitted Cheriyan.
“I became a mentor because I’m going to make damn sure I’m going to make a difference to someone else. … I don’t want anyone to ever think, ‘Oh no, is there something really wrong with me?’ and not have an answer.”
Change in routine was difficult for the young man, as it can be for many people on the spectrum. Cheriyan saw that the student was taking 12 pages of notes for each chapter of a book. When he suggested that it might be more effective to selectively scale back a bit, the mentee seemed unconvinced. But after almost failing his mid-term, he listened to Cheriyan, who showed him how to focus more on what the professor said in class, instead of writing everything down from each chapter. He reduced his notes to five pages per chapter. He also agreed to use a computer program that could scan a book and read it aloud, allowing him to take notes while listening. He brought his grade up on the next exam and managed to pass his classes.
Autism experts note that one of the most challenging things about college for some students on the spectrum is the abrupt shift in support. In high school they may have had an aide assigned to go to classes with them, as part of the special education services to which they were entitled. And many were likely not even present at the legally required meetings with secondary school leaders to determine what services they needed; their parents attended instead, since communication can be one of the toughest challenges for many on the spectrum.
In college, things change. Students must, on their own, identify themselves as having a disability and ask for the accommodations and services they need. It is up to them whether to disclose their conditions to anyone on campus.
“That’s one of the biggest changes and challenges for students with disabilities when they enter college,” said Joanne D’Onofrio, associate director of the Center for Student Accessibility at CSI. “They have to learn to be effective self-advocates and they may never have learned those skills when they were in high school.”
CUNY’s program was financed on a relative shoestring by the private nonprofit FAR Fund. The original three-year grant was meant to be used to identify the most effective approaches, which could then be adapted by the rest of the system. But getting additional public dollars for higher education in New York, as in so many states, has been a battle.
This week, the FAR Fund agreed to fund Project REACH for another year, but after that, it’s not clear where the money will come from.
CSI staff believe their program has helped too many students to let it die.
John excelled academically in some classes but socially was often at a loss in high school. He went to a competitive upstate college for two years and was miserable. He transferred, became a participant in the program at CSI and recently became a mentor as well. He said he has learned an enormous amount in the past two years.
“It kind of helped me forge an identity. … I’m kind of proud of it,” said John, 25, with a wan smile. “I became a mentor because I’m going to make damn sure I’m going to make a difference to someone else. … I don’t want anyone to ever think, ‘Oh no, is there something really wrong with me?’ and not have an answer.”
This story was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education and originally published with the Huffington Post.