The earlier the better, or never too late? CSUEB scholars and experts say ‘yes’ to both
BY MONIQUE BEELER
Late on a Friday afternoon, graduate student Jesús Perez-Murillo and two classmates in the communicative sciences and disorders program are leading an exercise for a group called the Conversation Club. Seven club members, all CSUEB undergraduate men with autism, are seated in a circle in a classroom without windows, an ideal setting for dimming the lights and reviewing a scene from the television comedy The Office.
“We’re watching videos of difficult (social) situations and are coming up with ways to figure them out,” Perez-Murillo explains as a latecomer enters the room and takes a seat facing the large screen covering one wall.
In the scenario on screen, the lead character and his girlfriend are hosting a dinner party where a roomful of guests sits in awkward silence with no meal in sight. The discomfort level escalates as the girlfriend puts on a CD and starts swaying seductively to the music, then tugs aggressively on the arm of a resistant prospective dance partner.
Perez-Murillo hits the pause button and invites the group to describe the situation.
“It was a dinner party, and no one was eating,” offers Jobie Williams, 17, a freshman engineering major dressed neatly in a polo shirt with a black-and-white argyle pattern.
“Kenton, any thoughts?” grad student facilitator Kelli Thompson asks one of the group members.
“Never force people to dance,” says junior Kenton Barks, 20, a theater major with a beard and wavy, shoulder-length hair. “You can get in trouble.”
The comment inspires laughter from fellow Conversation Club members, grad students and Assistant Professor Shubha Kashinath, who supervises the club. The group’s objective, Kashinath explains, is to boost members’ ability to read social and emotional cues that don’t come naturally to people with autism.
More than an activity intended to boost participants’ ease at making small talk at parties, it’s the latest offering at Cal State East Bay that’s contributing to scholars’ understanding of autism, while providing services and support to individuals and families affected by the disorder. In addition to research at the university into interventions and treatments for young children with the disorder, CSUEB is one of a handful of institutions nationwide offering a campus-based program that helps participants transition from high school to college successfully.
Autism typically shows up by age 3 and affects how a child behaves socially, interacts with others and communicates, but the commonalities among those with the diagnosis may end there.
A child with an autistic spectrum disorder, or ASD, may experience mild or severe symptoms. In addition to ASD, some also may face challenges such as difficulty learning to speak or an intellectual disability. Other kids “on the spectrum,” as parents and experts often refer to the condition, get great grades and excel at learning.
Regardless of scholastic aptitude, however, most students with an ASD struggle socially.
Figuring out how to interact in social situations, communicating ideas and feelings, playing make-believe, imagining how another person feels, making friends and bonding with family members often doesn’t come easy for ASD students. Still others may have no language problems and an all-absorbing interest in a specific topic, such as baseball statistics or collecting things like bottle caps, as is common for those with Asperger’s syndrome, considered to be at the milder end of the autism spectrum.
College life on the spectrum
“Knowing a person has autism or Asperger’s doesn’t tell you that much,” says Katie Brown, director of Cal State East Bay’s Accessibilities Services. “The label really doesn’t tell you anything about the individual.” Brown’s office oversees College Link, the program that offers the Conversation Club.
At CSUEB, for instance, one freshman science major with an ASD was more than capable of meeting class requirements, but stumbled when it came to asking for what he needed from instructors or roommates — whether it was details about a homework assignment or a request to borrow a coffee mug.
Another exceptionally bright student shined in his computer science courses, but was oblivious to how his poor personal hygiene put a damper on his social life.
For still another CSUEB student on the spectrum, who didn’t realize his frequent questions and arguments with a professor were disrupting class for his peers, the solution was simple: The student agreed to limit himself to two questions per course meeting.
“The disorder is unique in that it’s mostly a social disorder that can be anywhere from completely invisible to completely obvious,” Brown explains. “You might have one student who can facilitate social situations very well. Then again, you might have a student who isn’t even aware he’s dialoguing outside his head.”
About 600 students of the 13,500 enrolled at California State University, East Bay, are registered with Accessibility Services, which assists students who have a range of mental, cognitive and physical health conditions such as limited vision, a learning disability in the area of reading or attention deficit hyperactivity disorder.
Fewer than two percent of students seeking help from Accessibility Services have an ASD, Brown says. Of these, eight students are enrolled in the university’s College Link program, designed to help participants make the transition from high school to successful college student. All current participants are men; no surprise, since boys are nearly five times more likely to be diagnosed with an ASD than are girls.
College Link offers support to students by helping determine their academic and independent living skills; setting goals; providing one-on-one coaching in and out of the classroom; and training them to use assistive technology. The program also offers structured groups to help students complete homework, facilitates opportunities for socializing — such as a recent bowling outing
with the Conversation Club — and puts participants in touch with other university resources, such as workshops for improving study skills and personal finance strategies.
“To be honest, we’re just like any other student, we just have extra difficulty,” says junior Kern Wallace, 20, a College Link participant. “This is the kind of program that should be in every college, if they had the funding.”
A handful of institutions statewide, including University of California, Berkeley, and Cal State Monterey Bay, make similar programs available, although they are operated by outside organizations. CSUEB is the only one in the region that runs the program as part of the university. It was part of what impressed Kern’s mother, Jan Bass ’75, and father, David Wallace, about the university.
“We did do a little research,” says Bass about the programs at Berkeley and Monterey. “There are (other) programs that offer support, but they’re independent of the colleges.
“When we heard about College Link, we thought ‘Oh my gosh, this is an actual integral part of the campus. This makes so much more sense.’”
In Kern’s elementary school days, Bass says, his excellent memory helped him get by in class. But by the time he was in second grade, he had been diagnosed with ADHD. Signs of social awkwardness also were becoming more pronounced, eventually leading to an ASD diagnosis of Asperger’s syndrome.
“He wouldn’t look someone in the eye,” Bass recalls. “If someone said, ‘Hi, Kern,’ he wouldn’t necessarily respond.”
Fortunately, Kern kept up with his classmates academically, and when it came time to apply for college, he had options. He decided on his mom’s alma mater, Cal State East Bay. It was close to his parents’ Hayward home, and he and his parents liked the university’s research and services geared toward those with autism, especially the then-new College Link program.
“It seemed like it was going to offer the kind of support Kern was going to need,” Bass says. “They were going to be offering some coaching, and some accommodations,
A pilot program that the university is not legally required to provide to ASD students, College Link has been supported by donors including Educational Foundation Trustees Allen Warren ’89 and Michael Bernick, and participants pay fees in addition to tuition. In some cases, students registered with the Department of Rehabilitation and deemed eligible for College Link services receive financial assistance. For College Link, it’s important validation that the agency recognizes the program is helping ASD students succeed in college, Brown says.
Numbers, needs rising
While the number of students on the spectrum enrolled at CSUEB may be relatively low today — Brown speculates that more ASD students attend the university than are registered with her office — the population nationwide is expected to climb dramatically in coming years.
A report released in March 2012 by the Centers for Disease Control and Prevention indicates that the incidence of ASD has risen steeply in the past 20 to 30 years. Once found in fewer than 2 cases per 1,000, the figure has climbed to 1 in 88 children, suggesting that more students with ASD may need supportive services at the college level.
Through College Link, Brown’s team nurtures independent study and living skills in participants.
“We’re linking students that graduate from high school to college and making a bridge for them, transitioning (them) from being a high school student to being a college student,” she says. “We hope we generate independence in their living skills, so they can move from their parents’ home to college living to, hopefully, down the road to having an apartment.”
Kern, a communications major, has participated in College Link since arriving at Cal State East Bay’s Hayward campus as a freshman in 2010. His first year coincided with the program’s first year. He and his parents like the fact that part of College Link’s objective is to collect scholarly details about the program and participants’ progress to help assess and improve its effectiveness, and perhaps one day become a model for other institutions.
“There’s practically no data about students with Asperger’s or autism in secondary education; most of it is on K-12,” says Kern, whose short dark curls frame his goateed face as he spins back in forth on an office chair in the College Link computer lab. “(There’s) no data on how students with autism do in college, how many drop out, how many graduate.
“I’m just wondering how many students with Asperger’s like me — with all the pressures I had — (even) with all these resources … end up having to drop out?”
Bass has seen marked growth in her son, saying she sees in him “someone who’s more confident, more mature. Someone who seems to be outgoing. He’s doing well academically. My husband commented: Kern has responded well to the support and structure of the program.”
During summer quarter 2012, Kern worked at an internship at the U.S. Department of Agriculture’s research facility in Albany where he helped update a database. He reported reliably to his job each day and navigated public transit on his own. Kern’s positive experiences working at the internship, living away from home with roommates, managing his time, schoolwork and finances make his parents optimistic about his future prospects.
“The hope has always been he’d be able to be independent,” Bass says. “But the concern is he might not be.”
Early intervention is key
Despite challenges Kern has encountered at times due to his ASD, in many respects he’s been fortunate, starting with the fact that he was diagnosed at a relatively young age. Assistant Professor Kashinath of the Department of Communicative Sciences and Disorders is working to improve the early diagnosis and intervention track record for more children long before they and their families contemplate college enrollment.
“Early identification and intervention became really important to me, because that’s our (best) chance to give the kids a chance to live within society,” she says. “People tend to assume that kids with autism don’t want to communicate, don’t want to have social interaction. The truth is: They do. They just don’t know how.”
Although Kashinath facilitates the Conversation Club — which she launched in the fall — it’s been her first experience working with adults with ASD. Her primary area of expertise is providing effective, early help to children with an ASD and their families, especially those for whom English is a second language.
“For 60 percent of kids (with autism), they have cognitive delays as well. That makes it harder to acquire language,” Kashinath explains.
Research shows that for children who receive therapeutic intervention by 18 to 24 months, the chance of language acquisition — the gateway to future success in school and in developing life skills — greatly improves.
At CSUEB, much of that assistance is delivered by graduate students supervised by Kashinath in her role as director of the Early Social Communication Research Clinic on the Hayward campus. In addition to gaining experience conducting play therapy in special treatment rooms that allow Kashinath and fellow supervisors to observe graduate students as they work with ASD clients, the clinic offers grad students training in some of the latest high tech tools for use with children with autism.
“The iPad is our latest exciting new tool,” she says, picking up one of two recently purchased through a grant from the dean’s office. “There are apps that help them read emotions, there are apps that help them communicate.”
Many young clients treated in the clinic attend public schools where their parents feel their children do not receive adequate support. Additionally, private clinicians may charge from $150 to $200 per session, an expense insurance doesn’t always cover, Kashinath says. By contrast, the CSUEB clinic charges a reduced fee of $20 to $30 per session.
“The parents feel a relationship (with CSUEB’s students) and feel a contribution in helping train future clinicians,” she says. “We have a huge waiting list.”
For young children with ASD, it’s optimum for them to have 20 to 25 hours per week of what Kashinath calls engaged learning. Many receive only one hour per week in the clinic and perhaps a few more at school. Kashinath’s sense of frustration about the disparity led her to a conclusion: “Our best shot at serving these young children is to reach out to families and teach, empower and educate them about strategies to work with their children with autism.”
To that end, Kashinath led a 2011 study with three CSUEB graduate students in which they conducted a parent-child playgroup with five families. They modeled the group after a mini-school day, complete with circle time, a reading period, outside play and inside play. Kashinath is using the study results — presented at a recent convention of state speech-language pathologists and audiologists — to improve training for future clinicians and identify research-based techniques that best help parents work with their own children.
The study also benefited the graduate students by giving them opportunities to apply their education in real life situations. Says Kashinath: “It was to help our students know life doesn’t work in a sterile room.”
Her graduate students facilitating the Conversation Club also say that experience has provided valuable firsthand experience that will help make them better at their future professions.
Facilitator Thompson says she expects to go to work in elementary schools once she completes her master’s degree, and kids on the spectrum likely will make up a large part of her workload.
“I feel so much more prepared and have a better understanding,” she says. “We take a lot of classes about working with students on the spectrum. It’s great to have the rubber hit the road.”