Autism, learning disabilities services grow on college campuses

As he sits in class at Eastern Michigan University, a flood of images streams from Tony Saylor's vibrant, creative mind down through his pen and onto paper.

Often, his doodling features the 9-year-old character Viper Girl who battles monsters with her pet fox Logan. Saylor, 22, has even self-published three books of their adventures.

Saylor's professors didn't exactly welcome his constant drawing, but once he explained it was the only way he could hope to process their lectures – and even to stay awake – most let him continue.

For college students with autism and other learning disabilities, this is the kind of balancing act that takes place every day – accommodating a disability while also pushing beyond it toward normalcy and a degree, which is increasingly essential for finding a meaningful career.

But Saylor and a growing number like him are giving it a shot. Students who would once have languished at home, or in menial jobs, or struggled unsuccessfully in college, are finding a new range of options for support services to help.

"I knew I didn't want to work in the fast food industry my whole life," Saylor said, sitting at the kitchen table of his family's home in this Detroit suburb, where he lives while commuting to EMU. His mother, Angela Saylor, says a 3-year-old program at EMU that supports autistic students – a graduate student who works with the program attends all his classes with him – has been a godsend.

Such programs within traditional universities, offering supplemental support for additional tuition, are sprouting up around the country (Nova Southeastern University in Florida is among the schools starting one this fall). "The K&W Guide to College Programs for Students With Learning Disabilities or AD/HD" has grown steadily since its precursor was first published in 1991, and now lists 362 programs, the majority of them now comprehensive services.

Meanwhile, other parts of the landscape are also expanding. College disability service offices (whose help is usually free) are also improving. Care centers, often for-profit and unaffiliated with colleges, are popping up near campuses and offering supplementary support. Finally, institutions with a history of serving large numbers of students with learning disabilities are growing, some adding 4-year degrees.

"This is the best time ever for students who learn differently to go to college," said Brent Betit, a co-founder of Landmark College in Vermont, which opened in 1985 with a then-unique focus on such students and now has a range of competitors. Among those Betit mentioned: programs within the University of Arizona and Lynn University in Florida, plus Beacon College, also in Florida, which like Landmark has a comprehensive focus on students with disabilities.

"There are better programs available than at any time in history," Betit said. "I think that's in part because of the entrepreneurial nature of the United States. When there's a need out there, and a business market available, people respond."

But the new players also bring new challenges. Families who would once have struggled to find options struggle to choose among them. Some experts, meanwhile, are concerned about the growth of for-profit providers, sometimes charging $50,000 or more. There are also concerns some enrollment-hungry colleges themselves are starting these high-priced services to attract students with disabilities, but lack the expertise or financial commitment to offer what they truly need.

That's what happened to Saylor, who spent two miserable years at a design and technology-focused school in Flint before learning about EMU's new program from his sister, a student there.

"We were led to believe there was more support than there was" at the previous institution, said his mother, who found herself having to constantly help Tony from afar. Tony says simply: "It was horrible."

"There's really no standards" for such on-campus programs, said Jane Thierfeld Brown, a longtime educator in the field and author of three books, including a college guide for autism spectrum students. Some "are just seeing dollar signs."

Another problem: These highly personalized services are expensive. Unlike in K-12, there's no legal right to a free college education for disabled students. So far, the expanded options mostly benefit those who can afford to pay out of pocket.

A study last year in the journal Pediatrics found about one-third of young people with autism spectrum disorders attended college in the first six years after high school, and the numbers are certainly growing. About one in 88 children is diagnosed with a disability on the autism spectrum, according to the advocacy group Autism Speaks. More broadly, federal data show more than 700,000 US undergraduates with some kind of disability, including cognitive and physical impairments, on college campuses (about 31 percent with specific learning disabilities and 18 percent with Attention Deficit Hyperactivity Disorder).

Virtually all colleges now enroll at least some students with learning disabilities – 56 percent have students with autism spectrum disorder and 79 percent with diagnosed ADHD.

But the transition from high school can be rough. Federal law requires K-12 schools to provide customized support that will help students succeed. College students enjoy a vaguer right to "reasonable accommodations" that requires less of institutions. And college students have to ask for their help — a challenge for many because poor self-advocacy skills are part of their condition.

As success stories, schools point to students like Katie Fernandez, who struggled desperately through high school in Connecticut with what was eventually diagnosed as an information processing disorder.

"I studied and studied and nothing was happening," she describes it.

Still, Fernandez cried when she first visited Dean College outside Boston, a school where the president estimates close to half of students arrive with either a diagnosed or undiagnosed learning disorder.

"I said, 'I'm not coming here, I'm not going to be labeled one of those special ed kids,'" Fernandez said.

But she did come, and after one semester felt at home. The prevalence of students facing similar challenges made for an accepting atmosphere. A supplementary academic coaching program helped, and while the coursework was all college-level, many classes were taught in small settings tailored to students' particular challenges.

The professors were also used to working with such students, and were familiar with the new technologies that are starting to transform teaching students with cognitive impairments (for Fernandez, one of the simpler ones was among the most helpful: a "pulse pen" that records audio as you write and lets students later sync their written notes and the teacher's accompanying words when they review).

In 2012, her senior year, Fernandez was retested. She was stunned by the results, and a little scared: She no longer showed a learning disability. That meant no more extended time on tests, which left her fearful for her upcoming GRE exams. But she was accepted into a graduate program in higher education administration and is now pursuing an advanced degree.

"I basically learned how to compensate for my weaknesses and my learning differences, which was the goal all along," she said.

Dean says about 75 percent of its associate's degree students persist to a degree at Dean or after transferring; the rate is slightly lower for bachelor's students. Landmark says roughly 80 percent persist to graduation there or elsewhere. Such figures are better than the national averages for all students. Experts say students with disabilities often take substantially longer than the traditional 4-year target, but they are remarkably persistent.

Still, there are no illusions the work is easy or success guaranteed. "College is not for everyone," says Dean's president, Paula Rooney. She recounts difficult conversations with parents up front about what's achievable. Still, she says, Dean is full of students on whom the system would once have given up.

Jim Meinen, a management consultant from North Oaks, Minn., whose 20-year-old son Will has struggled with ADHD since elementary school and now attends Landmark, says the family was "passionate about getting him a higher education."

"Our underpinning belief is any student, young adult with a learning difference, has potential," he said. But "we knew he would struggle as a mainstream student at most colleges" and chose Landmark for its tight safety net for students who struggle to advocate for themselves.

Will is starting his third year at Landmark, pursuing an associate's degree. The college is unrolling its first four-year program, and he may stay on. The goal, Meinen said, isn't a degree per se but a meaningful life. But, he added, a degree "increases the probability of a meaningful life. It opens up the options."

Tuition plus room and board at Dean runs close to $50,000, and the supplementary services can tack on another $7,000 or more. The college runs a handsome but no-frills campus, which Rooney says lets it give most students financial aid.

Betit, the Landmark co-founder, says there is also aid available but acknowledges his school (base tuition, room and board: $59,930) is among the handful of most expensive colleges in the country, and that low-income students are not yet fully benefiting from most of the expanded options nationally.

EMU's program charges its 12 students between $4,500 and $7,500 per semester, on top of regular tuition ($9,364 in-state). That appears to be within the common range for programs within traditional universities. In some places, state programs may help cover some costs.

Another option is for-profit programs that support students while they're enrolled in nearby institutions. One such program, College Living Experience, has six locations around the country. It charges $43,500 for its full program, which could include everything from intensive academic support to basic life and social skills training. Company president Stephanie Martin says the necessary help simply isn't available at many colleges.

"Many of the students who go to college who don't succeed, it's not because they can't do the academic work," she said. "It's the other aspects of their life that get in the way."

Still, Pamela Lemerand, director of clinical services at EMU's Autism Collaborative Center, says there are advantages to on-campus programs.

"We're in the fabric of the university," she said.

Educators in this field say they're hopeful, and their institutions, once deeply skeptical such students could succeed, are increasingly embracing their work. But they say it still requires painstaking one-on-one labor and extraordinary patience.

"Parents have expectations that A, B or C is going to happen in that order," said Julie Leblanc, director of the Morton Family Learning Center at Dean, and an alumna of the college. "We know in this business that sometimes it doesn't happen that way, and sometimes it's best it doesn't happen that way."

Every student is different, but the fundamental challenge is often the same. In high schools, many students come to rely on parents for everything from dressing themselves to packing lunch to making sure homework gets done. In college, the focus shifts to developing self-reliance – which sometimes means pushing them with tough love.

"I can say, 'What's it going to be like if you're 40 and still living with your mom?'" Lemerand says.

Tony Saylor isn't sure what the future holds. The immediate plan is to keep living at home. He admits his shyness and awkwardness have made it hard to make friends outside class. And he sounds like a lot of college students these days when he says he isn't sure what his degree (children's literature and theater) will offer him, only that he'll be better off than without it.

Angela Saylor says she's grateful for what EMU has offered, but knows how lucky she was to come across the program, and how hard it can be for others to find a good fit.

"I see more information becoming available," she said. But still, "given the statistics on the number of people being diagnosed with autism," she said, "they're going to have to come up with more options."