As Diagnoses Rise, More Colleges Add Services For Students With Autism
CHATTANOOGA, Tenn. — Jared Jellicorse made the dean’s list in his first year at the University of Tennessee at Chattanooga, an achievement that still makes his mother, Marla, tear up.
“That was just amazing,” she gushed proudly as she recounted it.
“Oh come on,” Jared Jellicorse, a biology major who goes by JJ, muttered, with a son’s typical embarrassment over a parent’s public display of pride.
Advertisement - Continue Reading Below
But there was something bigger behind this brief exchange. Jellicorse has autism, which can put up even more obstacles in college than those faced by students who aren’t on the autism spectrum — and which few higher education institutions have historically accommodated, despite a huge jump in the number of people diagnosed with it.
The Jellicorses chose the University of Tennessee at Chattanooga, or UTC, because of Mosaic, a comprehensive support program for students with autism. He’s now a third-year student; Mosaic students often take five years or longer to earn degrees.
UTC is one of at least 60 colleges and universities that have added some form of support program for students with autism beyond the academic accommodations required by federal law, such as extended testing time and quiet environments for exams.
Even these reach a limited number of students and can be expensive, costing as much as $7,000 per semester over and above tuition.
Colleges have created special support programs because other campus disability services, to which students with autism are often referred, don’t always meet all their needs, advocates and parents say.
“Not a lot of places have programs for kids with this sort of interesting cluster of challenges,” said Geoff Calkins, who learned this when he was searching for a college with his son Andrew.
The Calkins family visited several college campuses and decided UTC was the best fit. “If he were going off to a school that did not have this kind of a program, I would be calling him every day,” Geoff Calkins said.
The first autism support program in the United States began at Marshall University in West Virginia in 2002. The more recent uptick in the number of programs is partly due to wider public awareness about students on the autism spectrum, according to Arianna Esposito, director of life span services and supports at Autism Speaks.
It’s also the case that the number of kids and teens receiving a diagnosis of autism spectrum disorder, or ASD, has increased significantly in the last decade. About one in 59 children — most of them boys — is diagnosed with ASD, according to the Centers for Disease Control and Prevention.
Programs such as Mosaic help bridge the “services cliff” over which many young people with autism tumble as they age out of the special education system offered through their local public schools; that happens when they receive a diploma or turn 21, whichever comes first.
Young people who are on the autism spectrum are less likely to go to college or find a job after high school than their peers with other disabilities. One study found that only 36 percent participated in any type of postsecondary education, compared to more than two-thirds of all high school graduates.
For some students, autism support programs offer the only way they can attend college away from home.
Sally Jetmundsen’s son Norman “looks really good on paper,” and had no trouble getting into college. “But without a support program, he was going to have to stay at home and go to community college,” she said. “It was going to be an extension of high school. I was going to be waking him up, making him breakfast and asking, ‘Did you do your homework?'”
Instead, Norman Jetmundsen is now in his second year at UTC.
Studies have shown that college support programs can help students with autism not only survive but thrive. Almost two-thirds of students in the Mosaic program graduate within six years, a better graduation rate than for UTC students in general.
The transition from high school to college is stressful for any college freshman, but the anxiety can be amplified for students on the autism spectrum, who often face difficulties with organization, time management, communication and social interaction.
“These are students who are motivated, are very academically qualified and want to succeed in school,” Esposito said. “But one of the challenges that arises is how to navigate the social landscape.”
One concerned parent, Julie Solomon, said she talked to her son Teddy, who is in his second year at UTC, about how much independence would be required of him when he started college in 2018. “He still said to me, ‘You didn’t tell me I was going to have to manage all this on my own.’ For all kids, it’s a difficult transition, but for kids on the spectrum it can be more than they can do,” she said.
Many autism support programs also attract students who struggled at other institutions. Lana Wagner spent her freshman year at an art school that didn’t have any special services for students with autism.
“I sort of had the rug pulled out from under me in terms of what I didn’t actually know how to do and what I felt fear over,” Wagner said.
So she moved home to Washington State and enrolled at Bellevue College, a community college that has a program called Neurodiversity Navigators (formerly Autism Spectrum Navigators).
Even there, she was hesitant to sign up.
“I spent a lot of time trying to distance myself from that label,” Wagner said. “I passed as neurotypical very well, but I saw how other autistic kids around me were being treated and I was terrified of being seen as less than a person.”
But she found a sense of community in the Navigators program because she didn’t feel the need to hide her autism anymore. She said she didn’t realize “how much energy it took up in my life to constantly be doing that.” Wagner graduated last spring and transferred to a BFA program at DigiPen Institute of Technology.
Erik Uri, a computer science major who also graduated from Bellevue recently with a bachelor’s degree in computer science, said advocating for himself was one of the most important things he learned there.
Uri recalled a situation in which his grade dropped significantly because he didn’t turn in a paper. His professor later told him he would have been willing to work with him if he’d asked him to extend the deadline ahead of time.
“I learned about not being afraid to talk to teachers. They’ll meet you halfway,” said Uri, who is now a software engineer at Microsoft.
While Mosaic helps students stay on track in class, it also focuses on social and career skills.
Students with autism “needed more social inclusion. They needed all of these things that were not being provided through the typical academic accommodation process,” said executive director Michelle Rigler, who started the program in 2008; she also runs the university’s Disability Resource Center.
Mosaic enrolls about 10 new students every year and offers services that include coaching and supervised study hours. Participants also take four yearlong academic courses helping them develop social skills, starting with transitioning into college and becoming independent and culminating in developing professional skills and gaining work experience through internships and job shadowing.
Resident assistants in the dorms get special training, and Mosaic staff will sit in on meetings between Mosaic students and their roommates when necessary. UTC has added sensory rooms across campus, which provide quiet spaces to decompress. The rooms are equipped with weighted blankets, textured pillows and moldable Kinetic Sand, which can be soothing when students are experiencing sensory overload.
The university also pairs Mosaic students with other UTC undergraduates who take a class about autism and advocacy. These mentors meet with their students at least an hour a week and sometimes organize group activities, such as a seminar on relationships.
“We will help them understand what a neurotypical will seek out in romantic relationships and friendships,” said senior Hayleigh Weissenbach.
Weissenbach has mentored the same Mosaic student, Chris Bogans, for the last two years. “We like to go try new food places,” she said. “Chris is really brilliant. He’s funny and very sociable if you get him out of his shell.”
Bogans is a second-year student majoring in business analytics. He’s also been able to exercise his leadership skills as the treasurer for the Mosaic events committee. “The program has helped me be more social,” he said.
Andrew Calkins is also hopeful the program will provide a community at UTC. He is looking forward to connecting with other students in the program. At the Mosaic orientation in August, he overheard other students talking about Magic: the Gathering, a collectible fantasy card game he’s fond of. “I figured that’s a good sign in terms of getting involved with that community and making some friends there,” he said.
Many autism support programs serve a limited number of students. Admission can be competitive as demand outpaces supply.
Mosaic, and other programs such as the College Supports Program at Eastern Michigan University, also come with hefty price tags, in addition to tuition and housing. That makes it less likely for low-income students with autism to enroll. Studies show that the percentage of young adults with autism who attend college increases as household income increases.
UTC’s Mosaic program charges $3,500 per semester, while Eastern Michigan charges between $5,500 and $7,000, depending on the level of support. Eastern Michigan develops an individual support plan for each of the 34 students enrolled in its program.
At UTC, students who are Tennessee residents can get help paying for Mosaic fees through the state’s vocational rehabilitation program, which offers services to people with disabilities. But families that don’t have similar programs in their own states have to pay out-of-state tuition in addition to the program fees.
Not all programs charge extra fees. At Bellevue, students pay only the tuition for classes offered through Neurodiversity Navigators, which covers the instructors’ salaries and some funding for peer mentors who meet with students once a week. The program, which serves 140 students, otherwise mostly takes advantage of existing campus resources.
Even for colleges and universities that don’t have autism support programs, Esposito of Autism Speaks said outreach to the rest of the campus can help create a more inclusive environment. “Autism awareness training can clarify a lot of misconceptions that people might have,” Esposito said.
Mia Hummel-Levy, a second-year English major at UTC, wants people to know that students with autism are just like anyone else.
“Even people who are neurotypical, they’re all different in their own way,” she said. Even she “can’t always tell what I’m like because I have autism,” she said, “and what I’m like because I’m me.”
This story was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education.