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, (pictured) 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 U.S. 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."