Picking at a muffin in a campus cafe, Laura Mackenzie says she and her parents thought she’d go to college, “but pretty much everyone else didn’t.”
Cheerful and matter-of-fact, the 23-year-old recounts troubled years that included difficulty walking and expressing herself, tantrums, inability to interact with people and cringing from physical contact.
She remembers seeing kids playing and not having a clue what to say to them, “although I wanted desperately to join them,” she says.
She was diagnosed with autism at age 7. But she was obviously intelligent.
Armed with her own determination, her parents’ enthusiastic support and some help from special programs in school and college, here she is, earning a bachelor’s in behavioral science at Metropolitan State University in Denver.
“To put things into context, people thought I’d be in a mental institution,” says Mackenzie, who says she processes information and expresses herself relatively slowly but now belongs to two honor societies. “Looking back on it, it’s almost funny.”
For the uninitiated, it’s hard to understand how someone having trouble dealing with everyday life can achieve academically.
But it can happen with autism, and as a rising percentage of children are reported to have the disorder, a growing number of colleges and universities are offering programs to help them with the college experience.
“These are spectacular kids; they think about the world differently,” says Mitch Nagler, director of the Bridges to Adelphi program at Adelphi University in Garden City, N.Y. “We have kids here who got 800s on their SATs, … but they definitely have problems.”
One student at Eastern Michigan University has published three graphic novels but can get lost going from one of his classes to another — even though they’re in adjacent buildings — without practicing how to get there.
“Without question, he will always be under the care of someone,” says Dr. Patricia Lemerand, clinical director of the Autism Collaborative Center at EMU.
Getting extra help
Students with autism must do the assignments and take the tests, just like anybody else. But higher ed institutions are required by law to offer some academic accommodations, including note-taking services, longer times to take tests and separate locations for taking exams.
Some colleges go much further, depending on the needs of the individual. Their services can include frequent meetings with students, accompanying them or doing whatever else it takes to ensure they know how to get to class, plan ahead on assignments and tests, feel at ease socially and even eat and shower regularly. Staff members and peer mentors will also intervene with professors on a student’s behalf about what the student needs. Some students get their own bedrooms, because dealing with roommates can be too stressful.
The extra services can come at a cost. At Adelphi, for example, parents pay $2,620 per semester — on top of tuition — for what Nagel says is one of the most comprehensive programs in the country.
Fees for EMU’s program, which can be very intensive, range from $4,500 to $7,500 a semester. Others are less expensive, including Colorado State University’s, which costs $1,500 a semester.
Some parents and kids shop around for programs with the best fit, meeting with program administrators before applying to schools.
Just getting the kids to the college level can require a tremendous investment of time, money and effort, and with those extra fees, poor and minority kids can be left behind, program directors say. High schools in poor neighborhoods may have fewer services, leaving students unprepared to go to college.
The percentage of reported cases of Autism Spectrum Disorder (ASD) among children has climbed dramatically, with cases reported in all races and ethnic groups. It’s more prevalent among males than females. The overall percentage rose from 1.16 percent of children aged 6 to 17 in 2007 to 2 percent in 2011-2012, according to the Centers for Disease Control and Prevention. Most of the increase stemmed from boys and adolescents, aged 14-17. The rise is attributed mainly to better detection and reporting.
At least two dozen colleges and universities in the U.S. have special programs to help students with autism, and the number of programs is “growing every month,” says Dr. Jane Thierfeld Brown, a longtime disabilities expert who teaches colleges how to help autistic students. Programs are often a collaboration of several departments, such as psychology, social work and education, with graduate students serving as peer mentors.
Developing social skills
ASD includes a host of neurological conditions, with varying degrees of difficulties with language and communication, and rigid patterns of thought and behavior.
Students with ASD, which includes Asperger’s syndrome, can be poor at planning ahead, getting organized, standing up for themselves, reading body language, knowing how they come across to people and thinking other than in a linear, literal way. They may be brutally honest in their conversation and come off as aloof, arrogant, odd or clueless about what’s going on.
But they can be trained to be more aware, diplomatic and assertive in an effective way — skills needed for college, “the most social place you can think of,” says Brown, author of The Parent’s Guide To College For Students On The Autism Spectrum, published in 2012.
Students are together for meals, classes and in dorms, and are often racing to classes along with hordes of other students. “Even when they eat, sleep, wash, it can be overwhelmingly people-oriented,” Brown says.
People with autism can also be overwhelmed by stimuli such as bright lights, strong smells and loud sounds, all of which can be part of the college setting.
At the University of Arkansas, one student doesn’t want to attend football games because they’re too loud. But many students outgrow such issues by college, according to Dr. Aleza Greene, director of the school’s Autism Support Program.
Still, students with autism have different traits and must be evaluated very carefully before a plan of action is drafted. “Our saying is, ‘If you’ve seen one, you’ve seen one,’” Nagler quips.
Some students may not divulge that they’re autistic and thrive without help. Others need a broad range of services, but the goal is to teach them, through repetition and practice, what might be second nature to other students.
Some students think they don’t need help, but their grades say otherwise. “I tell them, ‘You may want to rethink your approach,’” says Greg Root, assistant director of Metro State’s Access Center for Disability Accommodations and Adaptive Technology.
The first year, as with many students, is the toughest, requiring a sudden, drastic change in degree of independence and academic structure.
Many students with autism take less than a full course load each semester and graduate in more than four years. Students delve into a variety of subjects. Nagler’s students have majored in math, physics, communication, accounting, history, biology, business, economics, art, sports management and other fields.To prepare for the world post-college, students can get career counseling and help preparing for job interviews. Some employers seek out individuals with ASD, says Julia Kothe, director of CSU’s Opportunities for Postsecondary Success Program.
Kothe and others with autism programs marvel at how attitudes have changed. Nagler recalls people’s reactions when he did a year-long study in the New York area in 2006 on whether such services were needed in colleges.
“Some said, ‘We don’t want those people here,’” remembers Nagler.
Mackenzie says she likes talking about autism. “I want to spread information about it,” she says. “I want the whole world to know.”
- DOE, UMaine launch autism resource, research institute (mainedoenews.net)
- Students with disabilities finding new college options (foxnews.com)
- Autistic Students Find Support At Marshall University (beyondautismawareness.wordpress.com)
- Autism, learning disabilities services grow on college campuses (csmonitor.com)
HUNTINGTON, W.Va. — For Laura Beth Galloway, the Autism Training Center at Marshall University was not just a place where her autistic son could have a chance to succeed, but a haven from the misunderstanding and bullying he endured throughout his school years.
Her son Joseph, 17 and 6 feet 5, has a high IQ and a fascination with aeronautical engineering.
He is also someone who was so anxious about shopping for a suit for the prom that he paced around the family car for 20 minutes to get up the courage to go into the mall. And he is a young man who finished his high school coursework at Marshall after he was beat up at his Ohio high school.
Marshall University Program aids students with Asperger’s
The College Program for Students with Asperger’s Syndrome was developed in 2002 by the West Virginia Autism Training Center at Marshall University. (Video by Julia Rendleman; 10/9/2013) CLICK THE PICTURE ABOVE TO VIEW THE ASSOCIATED VIDEO
The assault says a lot about the social difficulties of autistic students and the ways in which they unwittingly play a role in their own rejection. As Marshall training center interim director Marc Ellison recalled it, Joseph was walking through the school cafeteria when he stepped on a condiment packet. He picked it up, and looking for a way to wipe the gooey liquid off his hand, he spotted a jacket over a chair nearby, and used that, not recognizing how inappropriate that behavior was.
The jacket belonged to a school athlete, who naturally took offense, and proceeded to punch Joseph.
Mrs. Galloway, a registered nurse who works in Huntington, W.Va., where Marshall is located, said the Autism Training Center program not only allowed Joseph to escape those kind of incidents, but will now give him an opportunity to get a college degree and a possible gateway to work.
“I feel like God put us here,” she said in an interview in June. “You have to surround your child with people who see his value and see his strengths and weaknesses. He’s always going to have to have a go-to person who will understand his disability, but I really feel like the sky’s the limit for Joseph if he has the right employer and the right supports.”
Marshall’s program is the oldest in the nation to award college degrees to higher functioning students with autism, and it has only been around since 2002.
It was started with a donation of $50,000 from Alexandria, Va., businessman Larry Austin, whose son Lowell became the first student and now works at the training center.
“Marshall’s program is unheralded,” the elder Mr. Austin said. “I think it’s one of the great unsung stories in America.”
The program rests on three principles: the 45 students each have graduate student mentors who make sure they get their class work done and help them learn how to navigate the social world of college; each student lives independently in a dorm; and each student takes the same classes as non-autistic students.
That’s not to say that the autistic students don’t need plenty of help.
If they don’t show up for class, their mentors knock on their doors. If they ask too many questions during a lecture, they may be given a limit of only asking one question per session. And if they become anxious over not knowing what a future reading assignment will be, the program will ask professors to provide a more detailed syllabus.
The university covers the tuition of the graduate student mentors and provides them with a stipend.
“We have learned that the best way for our autism students to transition into adult life is to shadow someone who has been through the undergrad experience,” said Rebecca Hansen, coordinator of the center’s college program. “The mentors can serve as role models, and it’s really wild how much happens during a five-minute social interaction, and you’ll then see the [autistic] student mirroring the same type of behavior.”
While the autistic students are mainstreamed, they hardly make an overwhelming impact at the state school, which has 14,000 students.
Steven Hensley, the Marshall dean of students, said the school has a long history of serving students with disabilities, starting with physical impairments, because it sits on flat land near the Ohio River, a rare geographical feature in the mountainous state. That makes it easier for those students to move around the campus.
Ever since then, he said, “we now feel it is our obligation to serve students with disabilities. The unemployment rate is so dismal for people who are severely disabled that if we can get people who can be productive out in society, it’s the right thing to do at so many levels.”
The training center is proud of having the same student retention rate as the rest of the campus, but while its students are often successful in getting their degrees, finding meaningful employment is a steeper challenge.
John McGonigle, a University of Pittsburgh psychiatry professor who works with autistic adults, said it’s a national problem.
“Even for high functioning folks with autism spectrum disorder,” he said, “80 to 90 percent are unemployed or underemployed, and even the college graduates are often at home with their parents. They struggle, regardless of their level of ability.”
Despite that, the Marshall program has drawn enthusiastic support from parents who have seen their children falter at other campuses.
One of those parents is Scott Badesch, president of the Autism Society of America, whose son Evan is starting his junior year at Marshall.
Evan is 26, and tried two other colleges before enrolling at Marshall.
His family was in Florida when he graduated from high school. He first tried a small private college near his home, but “even though the school did everything in their power to make him successful, he just couldn’t fit in,” his father said.
Next came a community college in Orlando, but it also didn’t work well. “He gave up on education,” Mr. Badesch said, “and we did too because we felt that what he needed to get support wasn’t there.”
The Marshall program has been a much better experience, Evan said. Not only does he rely on his mentor, but such tools as the pictorial schedule he and other students get to help them plan their days, and the chance to socialize with other students like him, have made a critical difference.
Evan’s most noticeable behavior is that he pauses for several seconds before answering questions.
“I think about what that person is asking me for a minute or so before answering,” he said, “because I’m not sure my response is the one the person is looking for.”
That struggle to know what people want and how to gauge their intentions is a constant effort for people with autism.
Joseph Galloway treated it almost like a math problem, his mother said.
Growing up, she said, “he struggled greatly with social situations. He would go to school and come home and just be devastated, because I think people believed his behavior was a choice, and he was choosing to be obnoxious or inappropriate.”
Now that he is older, she said, “he can learn, ‘This is what I need to do’ — but it’s robotic and he goes into every social situation thinking ‘This is what I might face and this is how I should react to it,’ and yet he cannot read people’s expressions.”
The Marshall program works hard to overcome those social deficits. It also supports itself primarily with fees, so that the state money that flows to the center can be used for its outreach program to families with autism who live throughout West Virginia.
For every 100 students who apply for admission, the school may interview 30 and admit 10-12 each year. The students have high-functioning forms of autism, but are not necessarily the most gifted high school graduates, who can often get into other colleges without needing special social supports, said Mr. Ellison, the center interim director.
Mr. Austin, the program’s founder, said Marshall can often help transform students’ behaviors.
“One of the things that was so frustrating about autism when I first encountered it is that wherever your child fell on the scale, the thinking was they would permanently be at that spot. When my son was first diagnosed he was profoundly autistic; now I think his autism is virtually undetectable.
“In some skill areas, it’s like they have superpowers,” he said. “For me, autism is not a problem that needs to be fixed, but a matter of taking advantage of their strengths.”
As many parents on the Spectrum have begun to face the realization that their children are transitioning out of, or ‘aging out of’, their school districts, it is comforting to know that there are many colleges that have recognized that Autistic students can be effective and productive learners. They recognize that meeting many of the social needs of students will have a positive influence on their academic careers.
Colleges Reach Out
When he first arrived at Fairleigh Dickinson University, Brian Schwanwede of River Edge felt afraid “to the point of paralysis.” Schwanwede, who has Asperger’s syndrome, didn’t know how to join campus groups or make friends, and he had trouble keeping up with his assignments.
Then he discovered FDU’s Compass Program, which is designed to help students like him integrate into campus life. He walked into the first session and immediately found people who understood him. He is now a sophomore honors student who is active in campus activities.
Stefanie Ulrich, director of FDU’s Center for Psychological Services, says she hears similar success stories all the time. “Some of the kids first come here and they’re crying all day and unable to leave their rooms.” After the program, they become more gregarious, join clubs and graduate with confidence.
Students with Asperger’s — an autism spectrum disorder characterized by serious difficulties with social interaction — face difficult challenges in a college environment. Although people with Asperger’s are often highly intelligent, they are also likely to have limited interests, miss social cues and have difficulty living away from home.
The number of students diagnosed with Asperger’s is likely to grow in the coming years because, experts say, the condition is being better diagnosed. There is no known cause for autism, which affects 1 out of every 110 children.
As a result of the influx of students with Asperger’s, K-12 schools have been at the forefront of creating new programs for students with the condition and more severe forms of autism. Now, as more students with Asperger’s go on to higher education, college officials are trying to figure out what kind of help they need to provide.
David Nast, director of the Office of Specialized Services at Ramapo College, said students with Asperger’s make up the school’s fastest-growing population.
“It’s a particular challenge for our department because the issues they face go beyond the classroom. They need more social accommodations than academic accommodations,” he said.
Some youngsters with Asperger’s cannot even live away from home, said Vincent Varrassi, a Westwood-based consultant for students with disabilities. Those who can live away from home might need help making friends, advice on organizing a weekly calendar and tutoring to succeed.
Lawrence Kaplan, chief executive officer of the U.S. Autism and Asperger Association, said every college program is different and they are not all up to par.
“Many colleges have programs, but the support may not be what it should be,” Kaplan said. “While these kids may do extremely well academically in high school, they may have a tougher time in college because of a lack of support in college, and end up moving back home.”
Support for students suffering from physical or learning disabilities, such as tutoring, ramps and elevators, has long existed on college campuses, but programs for students with Asperger’s were only created in the past five years, said Dania Jekel, the executive director of the Asperger’s Association of New England.
Before that, many college students with Asperger’s relied on the more traditional disability services. But that rarely solved the social and organizational problems these students encountered. As a result, they had a high dropout rate.
While experts welcome the new programs, they caution that they have their limitations. Some students may suffer from such severe disabilities that they won’t be able to succeed away from home, and some colleges will not have the resources to provide the individualized attention that many Asperger’s students need, Jekel said.
What makes it even more difficult for Asperger’s students is that they develop more slowly than their peers. They are less mature socially at age 17 and therefore less likely to be accepted by their college classmates.
For students who find it just too difficult to live with a roommate, Rutgers and Ramapo allow students with Asperger’s to live in single rooms. Rutgers also offers students with autism spectrum disorders special faculty support and other accommodations.
Montclair State University runs a social skills training group as well as a peer mentoring group to help Asperger’s students make friends and learn how to interact socially, said Linda Smith, director of the Disability Resource Center. Counseling is provided when needed.
Nicole D’Angelo, a Montclair State student majoring in music who has been diagnosed with Asperger’s, said the social group is among her favorite activities on campus.
“We meet every week, and it helps us for any of our social issues,” she said. “It’s great to come here and meet others who have the same thing. We bonded through our disability.”