Eastern Magazine
The magazine of Eastern Michigan University

Eastern Michigan University

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Eastern on Autism

by Lynn Monson

Sally Hoyle

New courses, degrees and services that focus on autism are positioning Eastern Michigan University as an educational leader in one of the fastest-growing healthcare specialties in the country.

Autism has long been part of the curriculum in the College of Education and its department of special education, but now EMU is expanding its autism education and services both on campus and off.

The University is developing new undergraduate courses starting next year so that students majoring in special education can add an endorsement in autism. These will complement a relatively new M.A. in Autism Spectrum Disorders, introduced in 2008, that is drawing increased interest from recent grads as well as early- and mid-career educators.

EMU is also boosting its commitment beyond the classroom and into the community. This spring it will celebrate a $1 million staff and technology expansion at its Autism Collaborative Center (ACC), a family-based autism clinic located in a former elementary school on the northwest edge of campus. Currently a resource for about 100 families in Washtenaw and western Wayne counties, the ACC will now be able to link people all around Michigan with a network of autism resources via an array of high-tech digital telecommunications equipment.

In addition to these autism-related developments on campus, Eastern also has a voice in the national autism discussion. Sally Burton-Hoyle, an associate professor in the department of special education, was appointed last year to a federal advisory committee by Kathleen Sebelius, secretary of the U.S. Department of Health and Human Services. The Interagency Autism Coordinating Committee, authorized by Congress, updates an annual report with the latest scientific research and the “newest opportunities and challenges” for meeting the needs of people with autism and their families. It’s an important emphasis for government health research because the Centers for Disease Control and Prevention now estimates that 1 in 88 children have Autism Spectrum Disorders; a number much higher than just a few years ago, in part because of better diagnoses and more accurate reporting of cases.

The panel includes a Who’s Who of pre-eminent scientists, doctors and directors of federal agencies, including Francis Collins, a world-renowned geneticist and director of the National Institutes of Health. Burton-Hoyle is among the 15 “public members”—academics, individuals with autism, parents and leaders of advocacy organizations. Burton-Hoyle attends meetings and webinars and even gets an early look at the latest peer-reviewed medical journal articles, which she then shares with her students.

“We downloaded these and that was part of class,” she says, pointing to studies referenced in the committee’s annual report. “So (EMU students) are not getting old information on autism. They’re getting current, current (research) before even local (autism experts) know it.”Burton-Hoyle was already bringing a lifetime of autism experiences and extensive knowledge to her students before the federal appointment: she grew up in Kansas with a brother who was on the autism spectrum. She also served as executive director of the Autism Society of Michigan for 12 years and developed an extensive network of autism contacts and resources around the state and country.

Burton-Hoyle was hired by EMU in 2006 to teach and create the M.A. in Autism Spectrum Disorders program. That program started with about 10 students in 2008 and has grown rapidly to 49 this year. She is now developing the new undergraduate curriculum.

Also early in her time at EMU, Burton-Hoyle worked with Gretchen Reeves, associate professor in the College of Health and Human Services, and Pamela Lemerand, associate professor of occupational therapy at EMU’s Institute for the Study of Children, Families and Communities, to create the Autism Collaborative Center. It opened in 2009 with a relatively small staff in the former Fletcher school.

Philip Smith, department head for special education, says the ACC was started to meet many needs. “(It was) an opportunity for folks here to be able to give our students real-world experience, and then to be able to share the amazing expertise we have here at EMU about autism with folks in the community,” he says. “People recognized early on that the kinds of needs that people living with autism and their families (have) stretch across a whole bunch of disciplines. So it was designed intentionally to move across those traditional boundaries between special education and physical therapy and occupational therapy and speech language and psychology…”

Studying the problems of autism in a classroom is one way to learn, but a better way is to meet the families who are dealing with it, Smith says. “The extent to which there are real people living with autism and their families right here, (students) can start to make real human relationships with those people, and understand people as people rather than a set of symptoms and a set of diagnoses. Because I think what breaks down those barriers are establishing relationships, getting to know Johnny and getting to know Johnny’s family ... and the things they experience.”

The ACC has received two grants through the Michigan Department of Community Health, used mainly to increase staffing and to purchase and install hardware and software for live video and audio links between the EMU center and anyone with Internet access.

Jon Margerum-Leys, associate dean of the EMU College of Education and Office of Academic Services, says the emphasis on video communication has advantages for families. If one parent brings a child to the EMU autism center for a therapy session, other family members and the child’s other healthcare providers could observe the session from afar. It not only reduces travel time and expense, but it also reduces the information burden on the accompanying parent who previously would have had to remember and explain the many developments to other members of the treatment team who weren’t present. Recorded therapy sessions and staff meetings can also be educational teaching tools for EMU students who no longer have to be present at the original events. Observation rooms adjacent to treatment rooms in the ACC allow only a limited number of people to observe professional interactions in person, but if the session is recorded it can be used in classrooms or in many other educational forums (provided parents give their permission).Margerum-Leys and Pamela Lemerand, director of the ACC, emphasize the importance of organizing resources to reduce the burden for families dealing with autism.

“What we’re poised to do is to help be a clearinghouse and help people work together,” Margerum-Leys says. “What we want to be in the middle of, is determining which way is forward and working collaboratively with other folks in the community. ... It’s knowing who the other players are, and really thinking about how best to work together.”Lemerand says what sets the EMU center apart from most private clinics is its emphasis on family. “The disorder of autism affects every single member of the family. Oftentimes, the best intervention you can give toward a child is really to support the parents in their parenting role and their understanding of autism and autism intervention. ... The life of parenting a child with autism is an exhausting experience. It is very stressful to marriages, it is stressful to siblings, and so we try to support that kind of wraparound intervention. The newest grant will allow us to have sufficient staffing to do that very well, very effectively.”

Having what amounts to an ongoing autism case study on campus is invaluable for EMU students, who get to see faculty and professional therapists working with families in a multi-disciplinary approach. It’s a symbiotic relationship: Students are assigned coursework and projects or volunteer at the center, all of which has benefits for the students, yet at the same time they are helping provide valuable services for families.

On a late afternoon in mid-March, two EMU grad students, Mona Mallad and Christina Ozee, were at the ACC to meet with Amy Sanderson, the center’s family services director. The students had brought along a project they had created for a graduate-level course taught by Burton-Hoyle. The assignment was to create a package of visual aids that would document each step a child would take in getting a haircut at the ACC. Haircuts are one of Sanderson’s favorite services provided by the center because they are a perfect example of how simple tasks for most people are sometimes impossibly difficult for people with autism. For years, Sanderson dreaded taking her son—who has autism—for haircuts because he vigorously resisted what is not a daily or regular task he was accustomed to.

Making haircuts predictable and easier is the goal of a method the center started a couple of years ago. To improve the process, Mallad and Ozee photographed a child who was using the service, then made those photos into a step-by-step guide with simple messages printed on each photo—“This is the hallway I walk down to get my haircut” or “I sit still when I get my hair cut.” The grad students created the pictorial instructions in both printed and video forms. They also created what might be called a visual schedule—a vertical banner that hangs on the wall next to the haircut chair. Each step has a visual icon that parents can point to each step of the way; when each step is complete, that icon is removed so the child can follow their progress and focus on what’s next. When all the icons are removed, they know the haircut is over. “It’s modeling the correct behavior rather than saying ‘don’t do this,’ ” Sanderson says. “It very organized, very calming for a lot of our kiddos.”

Mallad has experience working with children with severe cognitive impairments, but now she plans to focus on children with autism once she completes her master’s degree at Eastern. Ozee says her EMU coursework has emphasized the unique educational needs of every child, including those with autism. “It’s just a puzzle and you want to reach all kids,” she says.

EMU’s contribution to the study of autism is growing at a significant pace, led in large part by Burton-Hoyle’s commitment to the field. That commitment started with her brother many years ago and continues today just as intensely, three years after his death at age 45.

“My life and my work has beautifully taken me to every part of the spectrum, which is just so fascinating. So I look at it all really as a blessing and as a blessing to my students because they get a different perspective for future teachers,” she says.

“I tell my students what my goal is for them is that they are going to change the world. Because they are going to go out there, they are going to understand autism inside, outside, upside down. And they are going to go to wherever (their jobs take them) and rise to being in charge.”