Colleges step up to support students with autism
Those with disorder have lower chance of graduating versus general population
ST. LOUIS COUNTY, Mo. — The first time Hailey Hall went to college, it was 2008. She lived in Georgia and had been diagnosed with autism four years before.
In high school, the diagnosis meant she had access to smaller classes and a therapy group that helped with social skills. But when college started, that all stopped.
“I was responsible for everything,” said Hall, 35. She ended up dropping out.
Since Hall was diagnosed two decades ago, the number of children with autism has shot up from 1 in 125 to 1 in 36. Now, college administrators across the country are responding, training staff, adapting to learning differences and promoting self-advocacy. A few local universities are even touting some success: Small steps, they say, appear to be working.
Webster University has a resource center where students learn strategies to cope with the rigors of college. St. Louis University assembled a sensory room, with a tabletop fountain and a miniature rock garden. And the University of Missouri-St. Louis has a two-year program that fosters interpersonal and life skills.
“It’s a retention issue,” said Jonathan Lidgus, the director of UMSL’s Office of Inclusive Postsecondary Education. “What can we do to help them persist through their undergraduate degree, to help them unlock their next steps?”
Autism spectrum disorder, a developmental disability, has no correlation with intelligence, and is marked by difficulty with social interactions, communication deficits and repetitive behaviors.
And it can make college difficult: The rate of completion for autistic students lags far below that of the general postsecondary population,
39% to 59%, according to the National Institutes of Health.
In elementary and secondary schools, adaptations — as mandated by the federal Individuals With Disabilities Education
Act — have become routine. Fidget toys and movement breaks reduce stress and improve concentration. Visual cues and written instructions clarify daily expectations.
After high school, the legal framework around disability changes. Adult students are covered by the Americans With Disabilities Act, which prohibits discrimination but has no metrics for individual progress. The onus to articulate needs and ask for assistance shifts from the school to the student.
Higher education has been inching toward inclusion, advocates say, but there is a long way to go. And the measures taken — like classroom modifications or informational campaigns — are mostly voluntary.
“Colleges have been slow to catch on,” said Lee Burnette Williams of the College Autism Network, a national nonprofit. “It feels like those students have just fallen off a cliff of support. What inevitably happens is they don’t succeed.”
Almost all campuses have an office that provides resources to students with documented disabilities, but comprehensive support programs for autism are rare. The first one, at Marshall University in West Virginia, opened in 2002.
Today, there are about 100 such programs, according
to the College Autism Network.
The transition to college is a jolt for almost any 18-year-old. No one checks to make sure you are studying or attending class. Sleeping and eating habits fluctuate. The guardrails of childhood are gone.
Autistic students often also struggle with isolation, unpredictable schedules and an increased emphasis on grades, experts say.
“Everything looks so different,” said LaToya Griffin, academic coordinator at Webster University’s resource center, known as the Reeg. “We are teaching students to self-advocate so they can come on the campus and thrive.”
Dara Massey, 24, earned her associate’s degree before enrolling at Webster in fall 2022. Getting her point across to professors and classmates has always been a challenge.
“I sometimes ramble,” Massey said.
But the Reeg has given her strategies: Take a deep
breath. Write it down. Massey, who is majoring in animation, expects to graduate this spring. Her drawings help her communicate, too.
“I like creating characters to tell different stories,” she said.
Three years ago, SLU’s Center for Accessibility and Disability Resources applied for a $3,000 grant to build a sensory room on campus. The therapeutic spaces — commonplace in grade schools — house items like bean bags, weighted blankets and bubble tubes that people can use to calm themselves or regain focus.
Occupational therapy professor Sarah Zimmerman enlisted her students to design SLU’s space, which includes a “cocoon” swing and adjustable music and lighting.
“There’s not a lot of areas to decompress and recharge,” Zimmerman said. “Why would that not benefit our kids in college?”
Kayla Baker, a junior
studying education, makes regular appointments for the room for “an escape from the day-to-day stressors that come with autism.”
As she goes about her routine, things many people are oblivious to drain her: small talk, eye contact, background noises.
“Those are all checklist items I have to manually consider throughout the day,” Baker, 21, said. “Even with all the accommodations in the world, I can never not be autistic.”
The Link program, for autistic students at UMSL, launched five years ago. Each semester, a few dozen students enroll in Link at a cost of about $2,600, plus regular tuition. The two-year program goes beyond academics, covering independent living, interpersonal skills and career planning, said Lidgus, the UMSL director.
When students complete Link, they earn a certificate or continue on toward a four-year degree.
For a long time, any credential seemed out of reach for Conner Stewart.
“School is not that easy,” Stewart, 24, said.
But Link, which he completed last year, benefited him inside the classroom with tutoring and extended test times. Stewart learned to navigate the MetroLink, buy groceries and manage his money. He practiced writing a resume and doing interviews, landing him a job at the St. Louis Zoo.
Stewart still meets with a coach once a week. Now he is working toward a bachelor’s degree in history, though his childhood on a farm and his work at the zoo are pulling him toward something animal-related.
The college experience is not always rosy. Some professors are not as understanding. Some classmates are not as friendly. But most are. And Link has put Stewart on a path he would not have considered otherwise.
“It’s been life-changing,” said his mother, Charlene Stewart.