Empowering Students with Autism Spectrum Disorder

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As the number of students with autism entering postsecondary education increases, colleges and universities offer more programs and accommodations to help them manage the demands of college life

Three years ago, Aleza Greene started the Autism Support Program at the University of Arkansas. Greene, a clinical assistant professor in the College of Education and Health Professions at the university, previously worked for a private company that supported students with disabilities in postsecondary settings, so she had experience with this type of work.

Aleza Greene, founder of the Autism Support Program at the University of Arkansas
Aleza Greene, founder of the Autism Support Program at the University of Arkansas

More important, perhaps, she has an autistic son.

“He was getting older and I wanted there to be something available for him,” Greene says. “And I assumed that if he needed [help], there were other kids who needed it, too.”

What Greene saw was a need for a program that would help students with autism who were intellectually capable of postsecondary work handle the logistical parts of college life, such as timeliness and prioritization of tasks, that these students frequently struggle with.

The need for a program such as this proved even greater than Greene expected.

In its first year, her program enrolled five students. By the 2015-2016 academic year — the program’s fourth year — Greene believes the number will increase to about 15, closer to its maximum of 20. Now she finds herself fielding inquiries from students and families interested in the University of Arkansas mainly because of this program.

Trends toward programs like this are likely to continue as autism, and awareness of it, grow more prevalent nationwide. At this point, the numbers represent only students who ask for help. The real number of college students with autism is assumed to be much higher.

As autism awareness increases, the number of students with autism who ask for help is expected to grow. This means that colleges and universities are being forced to learn how to accommodate them, either by expanding programs already in place or by creating new ones.

“[Dedicated programs] are still rare, but more are popping up every year,” says David Kearon, assistant director of adult services at Autism Speaks, a nonprofit autism advocacy organization. “It makes a lot of sense for [colleges and universities] to be prepared to accommodate more and more students with autism.”

David Kearon, assistant director of adult services at Autism Speaks
David Kearon, assistant director of adult services at Autism Speaks

In the coming decade, 50,000 young adults with autism will graduate from high school every year — a half million students over 10 years. Some will move on to life skills programs or into vocational or technical schools, Kearon says, but an increasing number will likely apply to and enter colleges and universities. This is due, in part, to the jump in the sheer number of autism diagnoses.

In 2000, the Centers for Disease Control and Prevention (CDC) reported that one out of every 150 children was diagnosed as having autism. In 2010, the most recent year for which the CDC has data, that number increased to one in 68.

Not only is the base number increasing, the number of students with autism succeeding in secondary school is also rising — thanks to the success of inclusion programs and to greater parent advocacy, says Joy de Leon, dean of students and director of learning enrichment and disability services at Beloit College, a private liberal arts college in Beloit, Wis. “We’re doing a lot better at getting these students through K-12 to get to college,” she says.

Joy de Leon, assistant dean of students and director of learning enrichment and disability services at Beloit College
Joy de Leon, assistant dean of students and director of learning enrichment and disability services at Beloit College

For de Leon, who runs the college’s disability services program, this has meant that the number of students with autism spectrum disorder (ASD) asking her office for accommodations has increased from about three in 2001 to about 10 (out of 1,250 students) in recent years. These accommodations might include low-distraction areas for test taking or more time for taking tests; some parents even hire private coaches for their child. However, the accommodations each person needs vary greatly as the autism spectrum is wide, and autism is often accompanied by other diagnoses such as attention-deficit/hyperactivity disorder (ADHD) or anxiety disorder. As de Leon says, “If you’ve seen one student with ASD, you’ve [only] seen one student with ASD.”

To manage the increased number of students asking for help, de Leon hired several students to serve as organizational tutors. These tutors provide guidance with time management and prioritization, not with actual schoolwork.

Offered through Beloit’s disability services office, this service is currently provided at no cost because de Leon does not consider the college large enough to justify a dedicated program at this time.

Unlike Beloit, where the program is still relatively new, Marshall University in West Virginia has had a dedicated program for more than a decade. This public university is home to the Autism Training Center, created by the West Virginia legislature in 1984 as a resource center for families and teachers. When a parent asked the training center about postsecondary options, the staff organized a pilot program called the College Program for Students with Autism Spectrum Disorder, which launched with only one student in 2002.

That program has grown over the years to include more than 50 participants, all of whom take regular classes at the university, augmented with coaching to help them manage independent living, study skills, and other logistics of university life. For the past 10 years, more than 50 students have applied for admission each year, of whom the university is only able to accept 10, says Program Coordinator Rebecca Hansen.

Rebecca Hansen, program coordinator for the Autism Training Center’s College Program for Students with ASD at Marshall University
Rebecca Hansen, program coordinator for the Autism Training Center’s College Program for Students with ASD at Marshall University

“The need is very great,” Hansen says, adding that of the 54 students currently enrolled, 47 are from out of state.

In fact, the need is far greater than the numbers suggest.

Unlike in primary and secondary school, students at the postsecondary level can choose whether to register with the school’s disability services office or whether to participate in a dedicated program.

“College students may not want to disclose that they have ASD,” Hansen says. “The under-the-radar folks are really the challenge.”

This is where organizations like the Autistic Self Advocacy Network (ASAN) come in. ASAN’s goal is to empower and organize people with autism. Among other efforts, the organization has produced a handbook called Navigating College, which has been downloaded more than 27,000 times. Also, for the past three years, ASAN has been holding a week-long workshop called the Autism Campus Inclusion Summer Leadership Academy, during which participants learn to advocate for changes — such as increased funding for student disability services — on their home campuses.

“I think we’ve definitely seen an increase in students who are willing to proudly identify as autistic as of late,” says Julia Bascom, director of programs for ASAN. “As the autistic community has gained in size and visibility, more people feel safe being open about who they are. It’s been really encouraging to witness.”

ASAN does not necessarily advocate for autism-specific programs. Instead, ASAN advocates for choice, individualization, universal design, and eliminating barriers to obtaining accommodations.

“We’ve found that many autistic students are perfectly happy being served through the standard disability services office at their university,” Bascom says.

For others, however, a specific support program can be helpful.

People with autism typically struggle with executive functioning skills, such as organization and timeliness, in addition to social skills. Support programs help close that gap. Greene’s Autism Support Program at the University of Arkansas, for example, provides academic coaches who help students organize their time, prioritize tasks, and sometimes help decipher a professor’s instructions. The program also provides peer mentors to help students navigate the social side of university life — by taking them to football games, for example.  The program was a deciding factor in Nathaniel Trowbridge’s decision to attend the university. Trowbridge had struggled with ASD first in middle school and then in high school, as well as during his two years of community college. Although he understood the subject matter, he had trouble completing his homework.

Nathaniel Trowbridge, student at the University of Arkansas
Nathaniel Trowbridge, student at the University of Arkansas

Nonetheless, Trowbridge wanted to attend college, in part because he wanted a chance at better jobs than the one he had at that time  — at Wal-Mart — but also because he felt he had more to offer.

“Even though I have a hard time doing my schoolwork, I still love to learn,” he says.

So when his mother heard about the University of Arkansas’ program three years ago, Trowbridge jumped at the opportunity.

“It was the reason I came, and I’m sure I’m not alone in that,” he says. “I can’t imagine some of [the other students in the program] going to college at all without the kind of help they have in the program.”

Like Trowbridge, other students with autism are seeking out colleges and universities that offer programs and services like the one at the University of Arkansas, Kearon says.

“[Colleges and universities] are recognizing that a larger number of students are looking for these services — so a cynical [way to] look at it is as a business decision,” he says. “A less cynical view is that they’re recognizing a growing need among incoming students.”

But programs like these do not come cheap. “The bottom line is it’s expensive,” Kearon says.

Luckily, there are ways to help families offset these costs.   aut sidebar

Since 2012, institutions of higher education have been able to apply for status as a comprehensive postsecondary and transition program through the U.S. Department of Education. This status allows students at these colleges and universities with documented intellectual disabilities — who are unable to carry a full course load — to receive federal grants and work-study positions. Previously, only students carrying a full course load were eligible, but a 2008 congressional amendment changed this restriction.

Nationwide, fewer than 40 schools have received this designation.

“The problem is no one knows about this,” says Ernst VanBergeijk, associate dean and executive director of New York Institute of Technology’s Vocational Independence Program, one of the first schools to receive the designation. “It’s like the best kept secret in federal aid.”

It’s so little known that when VanBergeijk called federal student aid help lines posing as a parent, the people advising him didn’t even know about it.

A second option is to apply for vocational rehabilitation money, federal dollars earmarked to help individuals with disabilities gain employment. Some students with ASD have successfully applied for and received this money for degree-seeking studies, using the argument that a degree would make them more employable.

However, the way individual states distribute the money and interpret vocational rehabilitation varies greatly. For example, VanBergeijk says, New York will not disburse funds to students in degree-seeking programs, but New Jersey will. At Marshall University, Hansen estimates that 13 of 54 students enrolled in the College Program for Students with Autism cover the entire cost of the program with vocational rehabilitation funds.

Some private scholarships are also available, including the Brian and Patricia Kelly Postsecondary Scholarship Fund. Since 2013, this fund has granted money to postsecondary programs for students with ASD. The University of Arkansas’ Autism Support Program has received this grant money, allowing the program to provide funding to students.

But these options usually only defray costs, not cover them, and VanBergeijk wishes more help was available.

“You know what doesn’t come cheap is ignoring the problem,” he says. “We know intervention works because we now have this group of kids ready for college. A generation ago they would have been in an institution; now they’re dreaming about college.”●

Nina Rao is a contributing writer for INSIGHT Into Diversity.