Twice a week Nathan Terrell walks across the tree-filled grounds of Rochester Institute of Technology to the Campus Center and for an hour enters a “safe zone, when you can unload,” says the 19-year-old freshman.
He and his coach, Atiya Smith, a licensed therapist and doctoral student in counseling at the nearby University of Rochester, talk about his week, his homework, his roommate and how to talk to his new crush.
For Nathan, who is mildly autistic, this mentoring structure is more than just a nice program to help him ease into college, it’s crucial in helping him navigate a world of relationships and social interactions exponentially larger than what he had as a high school student in Centennial, Colorado.
“A lot of the help I’m getting is … (about) getting the most out of my experience,” he says during a recent Skype interview from his dorm room. “If I didn’t have the support, I’d be OK, I guess. I wouldn’t really have any friends, I wouldn’t really have a good time…” he trails off.
The 1990 Americans with Disabilities Act prohibits discrimination against people with disabilities and requires that government, public accommodations, employers, businesses and transportation services provide access and accommodations for the disabled. For colleges that means things like wheelchair ramps and elevators, as well as extra time for tests, interpreters or a note taker.
Yet, for Nathan, who took seven high school AP classes and got a 36 on the ACT, those accommodations don't really mean much. Instead of academic assistance, he's grateful for help understanding interpersonal communication, learning how to talk to professors and what group work should look like.
And Nathan is not alone.
While it's difficult to pin down exact numbers of students with autism spectrum disorder in higher education, experts do believe it's an under-identified and ever-growing population.
They cite data from the CDC that states 1 in 68 children will be diagnosed with autism, and a study by the U.S. Department of Education that found four years after high school, 57.5 percent of students with ASD were pursuing some sort of secondary education, including two- and four-year colleges, vocational training or tech programs.
Colleges and universities still have a long way to go to ensure they're ready to meet this growing, neurologically diverse population, but there are signs of progress, experts say.
When Jane Thierfeld Brown, a professor at Yale and director of the College Autism Spectrum, began working with college students on the autism spectrum in the early 1990s, there were two student support programs (beyond traditional ADA offices) in the country. Now there are 50, and she's sure she'll see another 10 ready by next fall.
“We’ve come an enormous way in the last 20 years,” she says. “I still remember having battles with the dean of the nursing department (in the 1970s) that a student with a learning disability could never get through a nursing program. Ten years after that we were talking about ADD and 'How could they go to college?'”
Now, it's students on the autism spectrum, she says, who are studying in every college and university across the country.
"This is the next frontier population," Brown says. "We need to learn about how to accommodate (them) in the classroom and the campus."
Rochester Institute of Technology freshman Nathan Terrell, who has autism, meets with his mentor Atiya Smith, a licensed therapist and doctoral student in counseling at the University of Rochester. | A. Sue Weisler, Rochester Institute of Technology
Nathan loves the support he's receiving, but he knows not everyone is eager to march into an office and declare themselves in need of help.
In fact, for each student who registers for accommodations, Brown knows there are another one or two ASD students on campus who didn't register but could benefit from some support.
(There are different ways of referring to those with autism, through person-first language: person with autism, or identity-based language, autistic student. There are strong opinions on both sides, and for this story the Deseret News used the way individuals described themselves, or the way sources talked about them.)
For many students, college is their first time away from home, away from parents and an autism diagnosis that may have followed them since grade school, and they want a chance to try it on their own without a label, says Bradley Cox, associate professor of higher education at Florida State University and founder of the nonprofit College Autism Network.
Other students may have had a bad experience telling someone of their autism, and thus choose to keep their diagnosis quiet unless there's a compelling reason to share it, Cox says. Nathan says his autism is mild enough that it would be difficult to tell just by looking at him. He's not quick to share his diagnosis but isn't opposed to talking about it either.
Cox recently received an NSF grant to study how spectrum students perform in intro-level STEM (science, technology, engineering, math) classes, and whether or not they benefitted from existing campus support.
He hopes his team's findings can highlight best-policy practices as well as the array of talents within this often-misunderstood population.
For too long, he's heard the public, other parents and even fellow researchers talk about autism like a disease that if they could eradicate tomorrow, they would.
For Cox, whose son was diagnosed with autism at age 3, it feels as if they're saying, "We don't want your son to be like that."
"I love my son," Cox says, "I want our research to validate these people as whole individuals, as people who have worth and value that has perhaps been unrecognized for a long time.
"I've got about 12 years before my kid gets to college," Cox continued. "I want to make sure that by the time he gets there, our colleges are ready for him, they understand him and people like him, and that there are systems and cultures and services set up to facilitate his success."
Beyond disability services
At RIT, the Spectrum Support Program (SSP) offices are in the Student Center, while the disability services offices are in the nearby Student Alumni Union building — close but "purposefully designed to be separate so students with ASD could be seen as a culturally distinct group with its own strengths and unique needs," says Laurie Ackles, SSP director.
For the 70 or so students that rely on RIT's Spectrum Support Program, support is focused on several areas of emphasis: self-care, self-advocacy, academics, social, executive function and career prep.
This one-on-one, time-intensive process is incredibly helpful, but also expensive, acknowledge both Nathan and Ackles. Unlike disability services, most spectrum support services are a fee-for-service program.
With a peer mentor, students might learn how to break down the steps of an assignment into smaller pieces, create a study outline for a test, or plan how to find someone to eat lunch with.
They might talk about how to work through roommate conflicts, set up a healthy sleep schedule, or even make sure they have a plan in place to get medication refills.
Because ASD affects executive functioning abilities to organize, plan and prioritize, college can quickly become "overwhelming for an individual with autism," says Julia Hood, director of the Carmen B. Pingree Autism Center of Learning in Salt Lake City, which serves preschoolers to adolescents.
Even though a student may be incredibly bright and able to understand the subject matter, the inability to navigate the many other requirements of college can often lead to a lack of success and even dropping out, Hood says.
Which is why learning about processes is so important for someone with ASD, experts say.
Rather than telling an ASD student to "go talk to your professor," a more helpful conversation might be: "It sounds like you need to reach out to your professor. Do you know when his office hours are? Do you have time to go then? Do you want to set a reminder on your phone? What are you going to talk about when you get there? What are the questions you need answered? Do you want me to go with you the first time?"
"We never want to support (our students) more than what they need," says Ackles. "This is coaching, not managing, not mothering — it's coaching."
And when students with ASD get that coaching and support, college becomes more than just a place to learn facts and figures, but a place to develop self-advocacy, Hood says.
"Programs at a university level also help (students) practice and learn what they’re comfortable sharing," Hood said. Maybe a student isn't ready to tell his peers about his ASD diagnosis, but he might learn to share that he struggles with differentiating group roles and responsibilities, which will hopefully lead to increased understanding in the group and thus a more positive experience.
"No one will be able to help the individual if the individual isn't open to having help," Hood said.
Over the past three years, Utah Valley University has seen a growing interest in its Passages program, a 9-week, fee-for-service program for ASD students and non-students in the community.
The program offers twice-a-week classes on understanding autism in adulthood and navigating social skills, plus activities every other Saturday for students to apply what they're learning — like seeing how easy and fun it can be to play pool with people they're getting to know, says Laurie Bowen, director of community services for the Melisa Nellesen Center for Autism at UVU.
"What is nice about our program is that we do have a curriculum, but we’re always trying to help that evolve to the needs of the students," she said. "Whatever is going on in the current students' lives, they can share that information and we'll build it into what we're teaching."
Like when a student wanted to learn how to casually introduce herself, the class did a "speed introductions" game a la speed dating. And when one student wanted to learn how to deal with the impending loss of a grandmother, there were several other students who had experienced loss who presented on grief, an approach that has been "pretty meaningful ... when they interact and learn from each other," Bowen said.
Passages has already served 80 students (and at least that number of parents through a companion class), and UVU is currently piloting a program in which students will work one-on-one with a mentor for more intense support, Bowen says.
"Because there are some unique components to autism, … even with all the supports, (some students are) going to fall through the cracks," Bowen said. "With these aides, we’re just kind of testing and learning some ways to offer more substantial support in ways that are individualized."
While most professors would quickly work to accommodate the needs of a blind or deaf student, "autism spectrum (disorder) is different, it's invisible and it's very much misunderstood," says Ackles. "(People) think students are being rude or they’re not paying attention or they’re just not doing the work and they don’t care, (when) they just really need a bit more awareness and understanding.”
If a student isn't looking at the professor when she's talking, perhaps it's because they are overloaded with sensory information and can only listen if they look down at their desk.
One student recently told Ackles his professor instructed everyone to get into groups, but then dismissed the class.
"Then everybody left," the student told Ackles. "How am I supposed to find a group when everybody's walking out the door?"
Everyone else in the class already knew each other by week eight and had no problem turning to friends and quickly grouping up. Yet, for someone on the spectrum who may struggle with interpersonal relationships, such a request is nearly impossible, Ackles says.
As a remedy, professors could assign groups and help delineate group roles, so everyone is clear on what to expect. Such an approach wouldn't just help an autistic student, but anyone in the class who has social anxiety or is painfully shy.
In academic lingo, such an approach is called "universal design," meaning that while it may initially be aimed to help a specific group of students, it will likely benefit everyone in the classroom, says Kirsten Brown, an administrator at the University of Wisconsin-Madison and part-time faculty member at Madison Area Technical College, who studies disability service centers and students on the spectrum.
For example, a student on the spectrum would appreciate a very concrete, coherent syllabus that clearly outlines due dates, reading schedules and test times — and so would all the other students, says Brown. Same thing with grading policies or class rules.
Professors also need to realize that if they've interacted with one student with autism, they've interacted with one student with autism, she says.
"By definition, this is a spectrum," says Brown. "Everyone is different and that means each student will have different strengths, skills and areas for support."
It’s only been a few months, but Nathan said he feels like RIT is where he belongs. He gets along well with his roommate, is just a bus ride away from his twin sister at the University of Rochester and loves his classes, especially “Game Development and Algorithmic Problem Solving I.”
For a young man who never had a best friend before, it’s nice to be in a “school full of nerds” where people think like he does and get his jokes.
Next year he’ll transition down to one session a week, but for now, he appreciates the bi-weekly check-in with Atiya, who “works with me — she’s here to help,” he says.
When asked what could be done to help more students like him, Nathan pauses.
“I think it’d be nice to have more social services to help integrate people,” he says. “If kids on the spectrum could feel more accepted — I feel like an outsider sometimes, a lot of kids do as well — (if people could) do something to try to make that less of an issue, I think it could be better all around.”