Colleges Are Trying a Broad Approach to Autistic Students. What Will That Cost?

Kristi Warkenthien cannot imagine what life would be like for her daughter, Megan, if they had not found Dakota State University.

Grade-school teachers had no idea how to handle Megan’s severe autism, classmates teased and bullied her, and college seemed out of the question.

But Dakota State fully embraced her. Helped by the almost-constant personal guidance of the tech-centric public university’s staff, Megan is now closing in on a degree in graphic arts and design.

“There is no way you could spend your money any way better,” Kristi Warkenthien says.

That kind of priceless value, nevertheless, may soon need to be quantified — at Dakota State and around the country.

As more and more colleges and universities see surging enrollment of students all along the autism spectrum, they’re trying to figure out ways to identify those students, educate them, keep them on campus, place them in jobs — and then pay for it all.

And that need for attention extends well beyond those with autism or even formal diagnoses. Dakota State is beginning a program this fall aimed at virtually all of its students, prodded by local employers who describe graduates as technically adept but often weak in communication and teamwork.

“They are very bright,” Julie A. Gross, executive director of the Lake Area Improvement Corporation, which represents more than 100 employers around Dakota State’s main campus, in Madison, S.D., says of its graduates. “But they don’t always interact with people very well.”

For years, colleges have been warned to be ready for a surge in autism and related conditions being seen among young children nationwide. That surge is now here. From an estimated prevalence of one in 10,000 in the 1980s, federal officials now estimate autism affects one in 68 children. The number of American adults on the autism spectrum is expected to reach three million by 2020.

And one in five American children has some kind of learning and attention problem, including dyslexia and attention-deficit disorder, according to the National Center for Learning Disabilities.

The transition past high school is uniformly one of the most daunting experiences for people with such disabilities. About a quarter of young adults with autism are neither employed nor in school, and an estimated 70 to 90 percent of people with autism are unemployed or underemployed. Yet almost half of them are considered to be of average or above-average intellectual ability, with that percentage trending upward.

Unique Abilities

The challenge lies in appreciating and channeling those unique abilities, says Robert Koegel Jr., a senior researcher in psychiatry and behavioral sciences at Stanford University.

In his previous post, at the University of California at Santa Barbara, Mr. Koegel recalls one socially awkward student with Asperger’s syndrome, a relatively high-functioning form of autism, who had great interest in physics and mathematics. The university, where Mr. Koegel co-founded an autism-study center, responded by setting up a club in which students designed protective packages that allowed eggs to be dropped off a building without breaking. The Asperger’s student had the best design, Mr. Koegel says, and his peers were impressed. “They thought, Wow, this guy is really smart, they all liked him — so what if he’s got Asperger’s?” Mr. Koegel says.

Some universities, like Dakota State, are now getting more aggressive in bringing the college experience to such students and their special intellectual demands. DSU has for years understood the need to help students like Megan Warkenthien, who arrived on the campus needing almost constant guidance to get through a day. Local employers, however, more recently helped DSU realize that some of the same basic approaches it was using to help Megan could improve the job-readiness skills of many more DSU graduates.

That level of recognition is still rare at most American institutions. Only about 50 or 60 offer individualized services, says Jane Thierfeld Brown, a Yale University expert who tracks such programs. The rest, she says, often have small administrative staffs that help students obtain legally mandated accommodations such as extra test time. The University of Texas at Dallas has 450 students with autism — the most of any college in the nation, Ms. Brown says — but it has only two staff members directly assigned to help them.

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Colleges and universities first must recognize the need, and then decide if and how they want to respond to it, says Ms. Brown, an assistant clinical professor of medicine at Yale who leads College Autism Spectrum, a web-based student-advisory service. And then, she says, an institution should figure out how to pay for the special services, given the huge amount of individualized attention that’s involved.

Colleges often begin by winning grants to help establish programs for students with autism and related disabilities, then offer the service at no charge. As students flock to it, however, colleges typically realize they need to charge participants. The average cost is about $3,000 a semester for intensive services, and few universities subsidize that over the long term.

Partial exceptions are usually private institutions, such as the Rochester Institute of Technology, which helps 70 to 80 students on the autism spectrum obtain and hold jobs through its cooperative-education program and charges each about half the $4,500 annual cost.

Personalized Services

Some interventions to help autistic people, using universal design concepts, can be both low-cost and beneficial to many students. One example, says Laurie Ackles, director of the Spectrum Support Program at RIT, is to simply modify drop-in academic-coaching services so that students can meet with the same assistant at the same time every week — a method that routine-minded autistic students find much more preferable. Other more-personalized services are unavoidably time-consuming and costly, even when other students provide them.

The federal government has played key roles first in encouraging students with learning disabilities to attend college and, more recently, in possibly helping them to pay for it. A 2008 law made college students eligible for federal financial aid even without a high-school diploma, and a 2014 law directs states to spend federal job-training funds in areas that could include autism-related services at colleges. Pennsylvania has formally taken that approach at seven colleges, and Ms. Brown is encouraging other states to do the same.

The private sector is another important potential source of support for such students. At least 50 large companies, including SAP, Microsoft, Hewlett-Packard, EY, and Freddie Mac, have made deliberate efforts to hire workers with disabilities such as autism, viewing them as a valuable talent pool needing just some managerial adaptions, rather than as a problem to be avoided.

For the relatively small price of workplace modifications such as softer lighting and noise-canceling headphones, the companies are finding they get workers with qualities that include staying on task longer, being scrupulously honest, and noticing important technical details that many others miss.

Corporate recruitment and hiring of such workers is not happening primarily out of a desire to perform a social good, Ms. Ackles says. “It’s because it’s a competitive advantage,” she says.

But translating that benefit for companies into dollars for colleges to run the necessary educational programs isn’t easy. The most successful so far, Ms. Brown says, are community colleges that have established partnerships with local tech companies to train workers for specific jobs that the companies seek to fill. In general, though, large companies have not yet seen the value of broadly financing educational initiatives to help build a supply of workers with autism or related conditions, she says.

Part of that probably reflects a society that, on many levels beyond the questions of employment, hasn’t yet spent enough time understanding the nature of people with autistic tendencies or executive-function deficits and their rapidly growing prevalence.

Attitude Mismatch

That kind of attitude mismatch was evident this summer, says Ms. Gross, of the Lake Area Improvement Corporation, when a Madison-area company brought in a DSU student for an internship. The company has a friendly, talkative atmosphere, but the student just kept to himself and his work.

“At the end of the summer, they just said, ‘He was great, he did a great job, but he was very different,’” Ms. Gross says. A friend recently described to her another DSU graduate with similar behaviors who can’t find a job, despite local companies’ seeking workers in her area of expertise.

With greater awareness of such people and their behaviors, big companies may be able to make the necessary adjustments, Ms. Gross says. But smaller businesses, like those around DSU, may not. The local company that provides her office with computer services needs workers who are both technically proficient and capable of speaking with customers when they make site visits.

“In a smaller company,” she says, “they’re not able to give them headphones like a larger company is — they have to actually interact with people.”

Soft Skills

That message to DSU’s president, José-Marie Griffiths — when she asked local companies in 2016 for suggestions on how DSU could improve itself — largely drove the creation of the new program, which is beginning this fall. The small but growing number of formally diagnosed autistic students on the 1,300-student campus — 24 in 2016, up from six in 2011 — was a secondary factor.

The program is starting with a relatively modest budget of $85,000, largely devoted to hiring a coordinator. That cost will be covered by a general student fee, and DSU has no plans to impose any student-specific charges, says the newly hired coordinator, Jordan Schuh.

The initiative will include academic- and social-support events for all students, covering topics such as time management, note taking, college-textbook comprehension, mobile study skills, test success, and test anxiety. Faculty members are also being taught to look out for students who may need more-intensive individual services.

The faculty generally understands the need, even if its members are beginning the academic year not quite certain what it will mean for them. Like DSU’s administrators, the instructors “have heard, loud and clear, from these employers that, Gee, we just need more of these soft skills,” says J. Gabriel Mydland, an associate professor of education. There seems to be “great potential” for the new program, even if some faculty members are “cautiously waiting” to see how it’s actually carried out, says Tom Halverson, an associate professor of computer science.

Meanwhile, as one of the families already enjoying intensive college-level services at a relatively low cost, the Warkenthiens are beyond happy. Michelle Ruesink, DSU’s director of student development, is a constant presence in Megan’s life, as she attends college more than an hour from her family’s farm, in Willow Lake, S.D. Ms. Ruesink meets weekly with Megan, making sure she takes part in campus activities and intervening whenever classes, classmates, or anything else becomes too difficult. Ms. Ruesink is “giving me the examples,” Megan says in a brief interview.

From a childhood of recalcitrant grade-school leaders and frustration-based tantrums, Megan now drives to college by herself and works summers at a local camp. Once when DSU had a water outage, her mother called to check in, expecting panic. Megan calmly told her the college had provided students with bottled water. “She just handled it,” Kristi Warkenthien says.

Megan is on schedule to graduate in 2019, after taking a couple of years longer than average, and then pursue an artistic career making T-shirts, purses, hats, and shoes. “I’ll be able to create things,” Megan says.

“They are so putting themselves out for my daughter,” Kristi Warkenthien says of DSU. “It’s unbelievable what they’re doing for her.”

Paul Basken covers university research and its intersection with government policy. He can be found on Twitter @pbasken, or reached by email at paul.basken@chronicle.com.