Autism Diagnoses Are Soaring. Here’s How Some Colleges Are Responding

STREET. LOUIS COUNTY, Missouri — Hailey Hall first went to college in 2008. She lived in Georgia and had been diagnosed with autism four years earlier.

In high school, the diagnosis meant she had access to smaller classes and a therapy group that helped her with her social skills. But when she started college, all that ended.

“I was responsible for everything,” said Hall, 35, who lives in Ballwin. He ended up abandoning himself.

Since Hall was diagnosed two decades ago, the number of children with autism has skyrocketed 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-defense. Some local universities even boast some success: They say the small steps seem to be working.

Webster University has a resource center where students learn strategies to cope with the rigors of college.

St. Louis University set up a sensory room, complete 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, director of UMSL’s Office of Inclusive Postsecondary Education. “What can we do to help them persist through their college studies and help them unlock their next steps?”

Autism spectrum disorder, a developmental disability, has no correlation with intelligence and is characterized by difficulties with social interactions, communication deficits, and repetitive behaviors.

And for many, it makes college difficult: The completion rate for students with autism lags behind that of the general postsecondary population, at 39% to 59%, according to the National Institutes of Health.

In elementary and secondary schools, accommodations, 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 responsibility for articulating needs and asking for help shifts from the school to the student.

Higher education has inched toward inclusion, advocates say, but there is still a long way to go. And the measures adopted (such as modifications in classrooms or information campaigns) are mostly voluntary.

“Colleges have been slow to catch on,” said Lee Burnette Williams of the College Autism Network, a national nonprofit advocacy and research organization.

“It feels like those students just fell off a cliff of support,” Burnette Williams said. “What inevitably happens is that they don’t succeed.”

Almost every campus has an office that provides resources to students with documented disabilities, but comprehensive autism support programs are rare. The first, 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 shock for almost any 18-year-old. No one verifies that you are studying or even attending class. Sleep and eating habits fluctuate. The barriers of childhood have disappeared.

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

“Everything seems very different,” said LaToya Griffin, academic coordinator at Webster University’s resource center, known as Reeg. “We are teaching students to advocate for themselves so they can come to 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.

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

But Reeg has given him strategies: breathe deeply. Write it. Massey, who is majoring in animation, hopes to graduate this spring. Her drawings also help her communicate.

“I like to create characters to tell different stories,” he said.

Three years ago, SLU’s Disability Resources and Accessibility Center applied for a $3,000 grant to build a sensory room on campus. Therapeutic spaces, common in elementary schools, house items such as bean bags, weighted blankets and bubble tubes that people can use to calm down or regain focus.

Occupational therapy professor Sarah Zimmerman recruited her students to design SLU’s version, which includes a “cocoon” swing and adjustable music and lighting.

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

It took some time for the room to notice. In his first year, only five students visited him. Last year, more than 230 students accessed the space, signing up for 30-minute slots through an app.

Kayla Baker, a junior from Overland studying education, schedules regular appointments there to “escape from the everyday stressors that come with autism.”

As she goes about her routine, the little things (things that many people ignore) wear her down: small talk, eye contact, background noises.

“Those are all checklist items that I have to manually consider throughout the day,” Baker, 21, said. “Even with all the adaptations in the world, I can never stop being autistic.”

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

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

‘It changes life’

The Link program, for UMSL students with autism, was launched five years ago. It is modeled after 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 two-year program goes beyond academics and covers independent living, interpersonal skills and career planning, said Lidgus, the UMSL director.

When students complete Link, they earn a certificate or continue to earn a four-year degree.

For a long time, a credential of any kind seemed out of reach for 24-year-old Conner Stewart.

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

But Link, which he completed last year, benefited him in and out of the classroom (with tutoring and extended testing times). Stewart learned how to navigate MetroLink, shop for groceries, and manage money from him. He practiced writing a resume and doing interviews and then got a job at the St. Louis Zoo.

Stewart still meets with a trainer once a week. He is now studying for a degree in History, although his childhood on a farm and his job at the zoo are pushing him towards something with animals.

The university experience is not always rosy. Some teachers are not so understanding. Some classmates are not so friendly. But most are. And Link has set Stewart on a path he probably wouldn’t have considered otherwise.

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

‘A feeling of belonging’

Hall, who left Georgia Gwinnett College more than a decade ago, never thought he would return. But her husband encouraged her to try again, and she enrolled at 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 nearly tripled in the last decade, from 54 to 158, according to Principal Amy Bird. It is difficult to get a true count of students with autism because it is up to them to reveal a diagnosis.

Access Office staff identify, in collaboration with the student, what types of interventions will facilitate their learning, from using headphones during classes to adding subtitles to movies. “Instructor notification forms,” which outline necessary accommodations, provide a directive to instructors who might otherwise be left in the dark.

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

“Everyone wants a sense of belonging,” he said. “It’s important to find your people when you’re here.”

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

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

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