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.”