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, who lives in Ballwin. 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. It had hundreds of visits last year.

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, for many, it makes college difficult: The rate of completion for students with autism lags 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 advocacy and research nonprofit.

“It feels like those students have just fallen off a cliff of support,” said Burnette Williams. “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.

‘Everything looks so different’

The transition to college is a jolt for almost any 18-year-old. No one checks to make sure you are studying, or even attending class. Sleeping and eating habits fluctuate. The guardrails of childhood are gone.

Students with autism often also struggle with isolation, unpredictable schedules and an increased emphasis on grades, experts say.

“Everything looks so different,” said LaToya Griffin, the 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 the fall of 2022. Getting her point across to professors and classmates has always been a challenge.

“I sometimes ramble,” said Massey, who lives in Ferguson.

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 version, which includes a “cocoon” swing and adjustable music and lighting.

“There’s not a lot of areas to decompress and recharge,” said Zimmerman. “Why would that not benefit our kids in college?”

It took some time for the room to catch on. In its first year, only five students visited. Last year, more than 230 students accessed the space, signing up for 30-minute slots with an app.

Kayla Baker, a junior from Overland studying education, makes regular appointments there for “an escape from the day-to-day stressors that come with autism.”

As she goes about her routine, little things — 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,” said Baker, 21. “Even with all the accommodations in the world, I can never not be autistic.”

The long-term goal is to build another sensory room at the opposite end of campus, said Kendra Johnson, the director of SLU’s resource center.

“It’s expensive to start, and you have to replenish it,” Johnson said. “But it would be very beneficial.”

‘Life-changing’

The Link program, for students with autism at UMSL, launched five years ago. It follows the model of the university’s Succeed initiative, which serves students with intellectual disabilities.

Each semester, a couple dozen students enroll in Link, at a cost of about $2,600, plus regular tuition. The program, which lasts two years, 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, a credential of any kind seemed out of reach for Conner Stewart, 24.

“School is not that easy,” said Stewart, who lives in the Central West End.

But Link, which he finished last year, benefited him inside the classroom — with tutoring and extended test times — and out. Stewart learned to navigate the MetroLink, buy groceries and manage his money. He practiced writing a resume and doing interviews and then landed a job at the St. Louis Zoo.

Stewart still meets with a coach once a week. Now he is working toward a bachelor’s in history, though his childhood on a farm and his work at the zoo are pulling him toward something with animals.

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 likely would not have considered otherwise.

“It’s been life-changing,” said his mom, Charlene Stewart of Millstadt.

‘A sense of belonging’

Hall, who dropped out of Georgia Gwinnett College more than a decade ago, never thought she’d return. But her husband encouraged her to give it another go, and she enrolled in St. Louis Community College in 2022. On the Meramec campus tour, she saw the Access Office for students with disabilities.

The number of students with autism using the Access Office has almost tripled over the last decade, from 54 to 158, according to director Amy Bird. A true count of students with autism is difficult because it’s up to them whether they disclose a diagnosis.

The Access Office staff identifies, in partnership with the student, what kinds of interventions will facilitate their learning, from wearing headphones during lectures to adding closed-captioning to films. “Instructor notification forms,” which outline needed accommodations, provide a directive to professors who might otherwise be left in the dark.

But the office’s purpose is not just about academic success, said Bird.

“Everyone wants a sense of belonging,” she said. “Finding your people when you’re here is important.”

The space has become a touchstone for Hall, who is studying fine arts. She works there a few hours a week as an assistant and checks in with Bird or other staff members on her off days.

“They’re very happy to have me there,” said Hall, “which is a nice feeling.”

© 2024 St. Louis Post-Dispatch
Distributed by Tribune Content Agency, LLC

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