"Brian" had always been a good student with a knack for mathematics. But, as is the case with many young adults with Asperger's syndrome, his pragmatic language and social skills presented challenges throughout high school. He had trouble navigating social situations and tended to withdraw. At first his parents, Ann and David, considered sending Brian to the local community college. The school was nearby, and Brian could live at home. But Anne had some concerns.
"I knew he would be able to do the work, but I was worried that he would just come home and play video games after class and not go out and meet new people," she explains. "I was worried it would be like an extension of what he was doing in high school—and he needed more. I know he needed to meet people and grow."
Then Ann and David learned about the new Autism Support Program at the University of Arkansas in Fayetteville. The program, in its inaugural year, offers the services that Brian's parents felt he needed most—academic coaching, mandatory study hours, and social skills training in a safe environment to allow him to grow—all while attending and living at a four-year university.
A growing need
The number of young adults diagnosed with autism spectrum disorders is difficult to pin down, but it's clearly on the rise. In March 2012 the Centers for Disease Control estimated that one in 88 children received ASD diagnoses, a 78 percent increase from a decade ago [PDF]. For students higher on the spectrum with the ability to tackle college-level studies, but who lack the language, communication and executive function skills to navigate college life, growing numbers of colleges are developing programs to help them bridge the gap and access the full college experience. Many of these programs incorporate the services of speech-language pathologists.
"All of us continue to learn and expand our skills across the life span ... individuals with autism may need more focused assistance for such skills as executive functioning and social skills to successfully prepare for adulthood," says Deborah Dixon, ASHA director of school services. "Speech-language pathologists are uniquely qualified to assist them to interpret the nonverbal cues and humor of professors and peers, engage in conversations and build relationships, all of which are essential for success not only in college, but also in life."
Here are a handful of university programs making use of on-campus communication sciences and disorders programs. Some have been running for a few years, and others are just getting started. They share, however, a passion for working with this student population and finding ways to help them succeed and ultimately be able to live independently.
Bowling Green State University
Now in its third year on this Ohio campus, "ASD Support @ BG" provides services to eight students who self-identified at enrollment as being on the autism spectrum. The program is supported by the College of Education and Human Development's Department of Intervention Services and the College of Health and Human Services' Department of Communication Sciences and Disorders.
The program sends a letter of introduction to the self-identified students, and an invitation to an introductory meeting to students and parents. Interested students participate in an individual intake interview. Lynne Hewitt, associate professor and chair of the Communication Sciences and Disorders program, describes this meeting as an informal get-to-know-the-student opportunity. "An open-ended conversation works really well. It's very rich and revealing and helps us know what the student actually needs," she says.
Sometimes students need help with time management. Sometimes it's academic. Many times it's social skills. Whatever the needs, the program finds a way to help the student, often problem-solving as issues arise, Hewitt says. The students attend individual speech-language sessions once or twice a week; content ranges from helping them keep up with their syllabi, interpreting feedback on assignments or even making sure they check their e-mail. Some present with traditional speech-language needs, including fluency and voice disorders.
"Working on social skills and pragmatics is number one for many of these students," Hewitt says. "They need help to understand conversational rules—initiating conversations, having appropriate conversations, how to end a conversation. We work with them on how to talk with people."
The program's use of education and CSD graduate students is a prime example of interprofessional education, says Mary Murray, associate dean for students and academic affairs in the College of Education and Human Development and professor of intervention services. Murray works with Lisa Handyside, assistant professor in the Department of Intervention Services, to supervise the graduate students in her program who provide supports for the students with ASD. "We're talking an education and medical model working together preservice," she says. "They don't typically have that experience, and doing this now—before they go into the field—is so fantastic."
But it's not always smooth running. Blending two departmental models into a seamless program required some compromises and mutual understanding. The departments are in different buildings, sometimes complicating meeting logistics, and the professions' approaches to working with the ASD population also are different. In theory, Hewitt explains, the education model is inclusion-based, whereas the speech-language pathology program builds skills one-on-one before the student tries them out in a larger arena.
Likewise Murray agrees there were some "learning moments" and recalls that the differences between the two models was particularly evident when it came to assessing and making plans for certain students in the ASD program.
"We, from an education background, have to have a plan in place before we start providing services. And Lynne was telling me that in speech they might meet with a student three or four times before coming up with a finalized plan. I'd never heard of anything like it," Murray says, laughing. "But I look at it as all positive because we're learning from each other, and this is exactly what goes on in the real world."
Hewitt and Murray hope to grow the program by hiring a director and accepting more students. But, says Hewitt, getting students to realize they need the program in the first place can be a challenge.
"Some of them really don't get that they need the help, some are in the middle as their parents are pushing them, others are not that committed and we only barely see them, and others we don't even see," she says. "Often it comes down to family support and ability to work with their student. With autism you have this problem of lack of self-advocacy. Day-to-day self-management is an issue, and they may lack insight into how their impairments are affecting their college success."
And there's the matter of funding. Although the program has a small amount of funding for graduate assistantships, it is difficult to grow in its current form, with Hewitt, Murray and Handyside volunteering considerable time.
"We hope to evolve to a fee-based model eventually, but right now it's out of interest and passion," says Hewitt. "Even if that doesn't come to pass, we're committed to continue to offer this service to the student body."
University of Rhode Island
The Communication Coaching Program at the University of Rhode Island has been available since 2010 and, like the Bowling Green program, operates through the time and effort of faculty with no charge to students. It, too, is run by two departments—the Department of Communicative Disorders and the URI Office of Student Life's Disability Services for Students program. Amy L. Weiss, professor and communicative disorders graduate program coordinator, works with Pamela Rohland, a one-time audiologist and now DSS director, to provide specialized programming for a maximum of six students each semester.
Students admitted to the university can choose to disclose their ASD diagnosis and receive academic support through the DSS office. If the student is deemed a good candidate with needs in social communication and executive functioning skills, he or she is invited to receive that support through the Communication Coaching Program, which includes an academic counselor through DSS and speech-language treatment provided by graduate students at the on-campus clinic. The students also receive a peer coach, an undergraduate communicative disorders student trained to spend an hour a week working on an activity that incorporates the objectives the student with ASD is working on. Activities may include preparing for conversations with professors or advisors, troubleshooting time management for scheduled assignments or even learning just how to hang out.
"These peers are not meant to be ready-made friends, and we stress to the peers the difference between being a friend versus being friendly," Weiss says. "The peers are simply meant to provide the students in the program with a safe way to work on goals in the campus setting."
Each week the peers devise a plan and submit it to Weiss or Rohland for approval. The peer coaches and graduate students, along with Weiss and Rohland, meet weekly to debrief about what's been going on with each student—what's working, what's not and what the student needs. The peer coaches receive academic credit, and the graduate students earn practicum hours for working in the program.
Although other, more rooted programs serve students with ASDs, programs like the Communication Coaching Program that actively use speech-language pathology resources are relatively new to the scene, Weiss says. But from the beginning of the Communication Coaching Program there was no doubt that SLPs needed to be involved.
"Pragmatic nonverbal levels of language and communication are rarely taught overtly, since most native speakers of a language learn governed aspects such as intonation or body language intuitively," Rohland says. "SLPs can break them down and teach those skills. They are uniquely qualified to explicitly teach students the hidden curriculum."
In the Department of Communicative Disorders, Weiss says, graduate and undergraduate students who work with the students with ASDs receive valuable experience, and the program has spurred some much-appreciated attention for the department.
"This has given us some visibility across campus and has put us in a position to try for grant funding," says Weiss. "It has served as a way to differentiate us."
Although success depends greatly on the student's interest and family support, most of the families and students report benefit from the program. It's too early to tell if the program is working in terms of graduation and retention, but Rohland remains hopeful that this program will help some of the students adapt to a complex university environment.
University of Arkansas
The newest of the programs is the Autism Support Program in Fayetteville, now in its inaugural year. It enrolled five students in its first semester: two freshmen and three upperclassmen.
"We have students from a variety of backgrounds, and it's actually good to have younger students, because if they are coming right out of high school they're used to structure and haven't had a chance to get used to so much free time," says program initiator Aleza Greene, assistant professor of curriculum and instruction in the College of Education and Health Professions.
Unlike the Rhode Island and Bowling Green programs, the Autism Support Program charges $5,000 per semester.
When Greene arrived at the University of Arkansas in 2006, she saw that the university's office for students with disabilities provided some accommodations, but didn't fit the needs of students with ASDs. Based on her previous professional experience at a private Florida post-secondary program for students with ASDs and her personal experience with a son on the spectrum, Greene wanted to create a program specifically for these promising, but at-risk students.
"All universities offer services like note-taking or signing if you have a hearing impairment, but this didn't seem adequate to me for kids on the autism spectrum," Green says. "I know from my own experience that their needs go a little deeper than that."
Greene called upon several programs on campus, including communication disorders, to help her start a program. Fran Hagstrom, associate professor and head of the Department of Rehabilitation, Human Resources and Communication Disorders, shared Greene's vision of the program and jumped on board immediately.
And from Greene's point of view, having the Communication Disorders department on board was "a no-brainer."
"Autism is a disability of social interaction," she says. "Our ASD students struggle to understand the hidden curriculum—that which is not communicated—and we need people who have an intimate understanding of communication, and those are the speech-language pathologists. It's imperative that we involve them."
The program's application process requires neurological reports, previous individualized education programs, an interview and letters of recommendation. Selected students must be willing participants.
"Mommy's excitement about the program is fine, but she won't come to the appointments and do the work," Greene says. "So we need the students to understand what this program is about and to be excited."
Once accepted to the program, students are offered housing. For this first year, there is a suite with four bedrooms, a common room and two shared bathrooms. Though this living arrangement isn't required, all of the new-to-campus students in the program chose this option.
The students are assigned academic coaches who meet with the students for five hours a week and help them keep track of their syllabi and assignments. In addition, the students have 10 mandatory supervised study hall hours per week.
"The concept of ‘free time' can really put these students in jeopardy," Greene says. "If they have too much of it, they can get off track fast."
They also have undergraduate peer mentors whose role is to just "hang out" and help with social skills. Once the program gets rolling, Greene also plans to add formal social skills training facilitated by communication disorders students.
And the students aren't the only ones who benefit. The graduate and undergraduate peers and coaches gain real-world experience working with people with ASDs.
"The benefits for my students are huge," Hagstrom says. "They will be working with people with ASDs throughout their careers. I want them to understand more than what is in textbooks and understand it differently. To work with a group of young people with ASDs will change their perceptions totally.
"Experience with young adults in college will let them see possible futures. When they are working with that 4- or 8-year-old child with an ASD and maybe the parents are having a tough time with the diagnosis, they can give a perspective shaped by working in the Autism Support Program. There are possibilities and there is a life in front of the young child just as there were possibilities and a life that they helped make happen for a college student with ASD. The job of the SLP is to facilitate this life regardless of age. We are lucky to have this college program on our campus. It's above and beyond what a typical clinical experience can teach my students."
As for "Brian," the first semester at the University of Arkansas has gone well, his parents say. He is navigating the classes and has even attended some Razorback football games with a group. "It's only the first semester, but he seems really happy, loves school and loves Dr. Greene," his mother reports. "This program is allowing him to have the college experience that we wanted for him, but with the help and structure he needs. Really it's a godsend—whether he needs it for just this year or for all four years, we'll take it step by step."