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Acting for Autism

By Elaine Jacobs Smith
August 6, 2016
Appeared in the Summer 2016 issue of
IUP Magazine

IUP is working to better prepare emergency departments to care for patients with autism and to help students with autism find fulfilling careers after college.

Projects Help Prepare Emergency Workers for Special Challenges

After his shift at a local pizza shop, a young man walked to his bus stop to go home. The bus was late, and the man got anxious. He began pacing, talking to himself, and flapping his hands. Thinking something was wrong with him, a passerby called 911. Minutes later, the man heard sirens and saw flashing lights as the police arrived. They asked him repeatedly for his driver’s license. He didn’t provide it; he focused instead on whether they would arrest him. Noticing what was happening, a nearby business owner stepped in and explained to the police that the young man has autism.

Joann Migyanka ’97, M’01, D’06 was a board member with the Arc of Indiana County, a support organization for people with disabilities,when she heard about that incident more than six years ago.

When the Arc set out to raise awareness about autism among first responders—police, firefighters, and emergency medical service providers—Migyanka, an associate professor of special education at IUP, pulled together a team of colleagues to create an educational video. It would be her first of two videos aimed at helping emergency workers interact with people with autism.

The videos, which have since gained use nationwide, now serve as a training model for one of the largest private universities in the country.

Migyanka was already well versed in the challenges of autism. She had worked with children with this neurodevelopmental disorder since the 1990s and was the Autism Society of America’s Professional of the Year in 2000, seven years before joining the IUP faculty.

Although people on the autism spectrum vary in their level of functioning, she said, they tend to share certain characteristics: difficulty with language and with understanding social cues; repetitive behaviors such as rocking, flapping their hands, or talking to themselves; and a heightened response to noises, sights, tastes, smells, or other sensory stimuli.

These characteristics tend to mix poorly with emergencies. “It goes from bad to worse” amid the lights, sirens, and general chaos, Migyanka said.

After securing $26,000 from the Pennsylvania Department of Health to create the initial video, Migyanka recruited fellow faculty member Susan Glor-Scheib to help write the script and Jeff Fratangeli’82, M’03, of her college’s Office of Special Projects, as director and editor. Students in the Communications Media program, along with David Lind ’77, M’79 of IUP-TV, filmed the video, and retired professor Ron Lunardini ’69 served as the training guide.

Released in 2010, Assessment and Communication Tactics for Autism was timed just right.

According to the Centers for Disease Control and Prevention, autism occurred in 1 out of 150 births in 2000 and rose to 1 in 68 births a decade later, an increase of nearly 120 percent. People with autism are a growing part of every community.

Soon after the video’s release, the Pennsylvania Autism Needs Assessment, a survey of 3,500 people with autism and their families, reinforced the need for training.

“One of the big, glaring things that came up in the survey was unwanted outcomes families were experiencing when faced with a situation that involved the police, emergency responders, or emergency departments,” Migyanka said.

Aware of the IUP team’s first-responder video, representatives of the Autism Services, Education, Resources, and Training collaborative approached Migyanka about creating a second video—this one targeting hospital emergency departments. ASERT falls under the Pennsylvania Department of Public Welfare’s Bureau of Autism Services.

The collaborative provided $30,000 in funding for the video and paired Migyanka with Arvind Venkat, an Allegheny Health Network emergency medicine physician who researches emerging populations, including people with autism. Migyanka assembled her same basic team from the first-responder video,and ACT for Autism: Assess, Communicate, Treat was released in 2013.

This time, the video follows a man with autism, portrayed by an actor, through an emergency department visit, from triage to the exam room to the radiology department.

His visit is riddled with problems. He grabs and pushes equipment in the exam room and refuses to listen to the nurse, who ends up calling Security.

“Hospitals have gotten pretty good at working with kids with autism,” Migyanka said. “But that huge increase in autism that was found in the 1970s and ’80s—they’re adults now. Typical hospitals are not prepared for adults. Even some of the big trauma centers aren’t equipped to deal with those behavioral issues.”

Dawn Landis ’95, of Indiana Regional Medical Center, let her patient try out the medical equipment

Dawn Landis ’95, of Indiana Regional Medical Center, let her patient try out the medical equipment—one way health care workers can help patients with autism feel more comfortable in the ER. Photo: Keith Boyer

Venkat, who narrates the video, explains that an emergency department is one of the most overstimulating and problematic environments for people with autism. The players in the video demonstrate ways to improve the situation: taking the patient to a quieter room with less equipment, giving simple instructions, and explaining procedures and even modeling them on the caregiver before trying them on the patient.

The video also stresses the need to communicate effectively with the patient. The nurse takes cues from the caregiver and makes use of pictures and a communication app on the patient’s tablet computer to help him explain what’s bothering him.

Communication, along with the sensory issues associated with autism, is one of the biggest barriers to a better ER experience, Migyanka said.

“If you take someone with Down syndrome into an emergency department, they may have fears, they may have anxiety, but the difference is in the way they cognitively think,” she said. “Sometimes someone with an intellectual disability has a better grasp of social nuances than a person with autism, so you can get them to understand or reason with them better. I think that’s why you see this need to look at specific strategies for people with autism, because they don’t pick up on social cues. They’re very literal.”

Since the video’s release, Migyanka and Venkat have traveled across the country to help train emergency workers. Based on the content in the videos and other training materials, they have also created three course modules that emergency personnel can take by way of the Emergency Management website to receive continuing education credits.

patient using an App for mobile device.

Apps for mobile devices are available to help patients communicate their medical needs. Photo: Keith Boyer

More recently, New York University approached ASERT about using parts of the videos and other IUP-produced materials to develop its own training for use at four affiliated hospitals. Once the training is in place, NYU plans to study its effectiveness.

“We’ve done surveys pre- and post-training to show the increase in knowledge and increase in comfort level when dealing with people with autism,” Migyanka said. “What we don’t know is whether it’s being implemented. NYU is going to carry on what we’re doing and collect data, so we’ll know, as they replicate our training, how well it works.”

Keep Reading: Navigating the Maze »

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Navigating the Maze

In the Labyrinth Center, graduate assistant Tony Grande provides academic and life coaching for IUP students with autism

In the Labyrinth Center, graduate assistant Tony Grande provides academic and life coaching for IUP students with autism. Photo: Keith Boyer

Center Builds Brighter Future for Students with Autism

Temple Grandin, author, animal science professor, and renowned livestock equipment designer, is likely the world’s best known person with autism.

Grandin speaks from her life’s experience when she suggests that for every tech whiz in the Silicon Valley, there’s someone with equal talent living in the family basement.

In the spirit of Grandin’s teachings, IUP created a center last spring that aims to help students with autism realize their potential and find fulfilling careers after their college graduation.

A pilot program that will continue into the fall, the Labyrinth Center offers IUP students with autism a one-credit course to help them address the challenges they face in college, as well as academic and life coaching and supervised study hours.

According to the center’s co-directors, special education faculty members Joann Migyanka and Becky Knickelbein ’74, M’85, while about half of people with autism are of average or higher intelligence, fewer than 20 percent who attend college make it through the freshman year.

While IUP and other colleges and universities have disability services areas that can offer extended time for tests, note-taking services, and other academic accommodations, students with autism tend to have different needs.

“They typically struggle within the context of the social environment of the university,” Migyanka said. “We need to provide them some additional support to address being able to navigate dorm life, being able to navigate time management—some of those executive functioning skills that allow them to problem solve.”

Before college, students typically rely on their families and schools for such support.

“College is very unstructured,” Knickelbein said. “What we’re trying to do is fill in that piece where they haven’t been taught to be self-advocates and they haven’t gotten themselves out of bed every morning. We’re not going to become their moms; we’re teaching them to do it, because they’ll never be successful in a job without it.”

While Migyanka and Knickelbein teach the one-credit course for students with autism, the coaching—on topics from course requirements to personal hygiene—is provided by a graduate assistant, currently Tony Grande ’14, of the Educational Psychology master’s program.

In the fall, the pilot will also implement a peer-mentoring program, in which interested students will take a one-credit course on effectively mentoring students with autism and then put what they learn into practice.

“We want to draw students from all over campus,” Migyanka said. “Lots of Labyrinth students are in STEM [science, technology, engineering, and math] fields, so it would be nice to have peer mentors from biology or computer science, because that’s what our students will need to know.”

Knickelbein reinforced that students outside the special education field are welcome.

“Some people go into the field because they want to help and help and help, and that’s not the role of a peer mentor,” she said. “We want mentors who are just being themselves. Our students can model what that looks like rather than be helped.”

As students advance, the plan is to transition their mentors from peers to faculty members, who can assist them with internship placement and other career preparations.

One graduate student sought assistance from the Labyrinth Center specifically to work on job-interview skills.

“You can imagine, if you don’t make eye contact, you walk out that door and you’ll never hear from an interviewer again,” Knickelbein said. “These are really aware students. They know how they’re perceived. It doesn’t mean they can fix it, though, on their own.”

Although Migyanka and Knickelbein were already exploring the creation of such a program, the Labyrinth Center started through an initiative of Pennsylvania’s State System of Higher Education and the Pennsylvania Department of Education to make sure students entering college with autism spectrum disorders, a growing population, would find the support they need. The State System also chose Edinboro, Kutztown, and West Chester universities to design their own programs, and it provided a consultant, Jane Brown, to assist.

Brown helped IUP obtain $5,000 from the state Department of Education to pay for the graduate assistant position. Lara Luetkehans, dean of IUP’s College of Education and Educational Technology, provided additional funding to convert a classroom in Stouffer Hall to a space that would meet the center’s needs.

Luetkehans also set out to help the center build more resources. She supported Migyanka’s participation in the Principal Investigators’ Mentorship Academy, aimed at helping researchers obtain more grants, and she supported pursuit of a National Science Foundation grant that targeted building up populations that are underrepresented in STEM fields.

Becky Knickelbein, left, and Joann Migyanka are co-directors of the Labyrinth Center at IUP.

Becky Knickelbein, left, and Joann Migyanka are co-directors of the Labyrinth Center at IUP. Photo: Keith Boyer

While women and minorities often come to mind, Luetkehans and Migyanka saw a good fit for people with autism, who are often drawn to STEM fields.

“They don’t think with their emotions so much,” Migyanka said. “They’re more analytical, logical, and visual, and that tends to lend itself to the hard sciences.”

Luetkehans pulled together a cross-divisional research team, led by Migyanka, to explore ways to recruit students with autism into STEM fields and to provide them with the support to be successful.

“It may not be the content knowledge as much as the social skills—sometimes people call them the soft skills of STEM—that people on the autism spectrum struggle with,” Luetkehans said, “but we want to give them practice and experience with that.”

One of the Labyrinth Center’s goals is helping students with autism find fulfilling employment, and so the research team began working with industry partners.

“They’re interested in learning how they can reconsider their work environments and restructure positions to leverage some of the characteristics people with autism tend to have, such as high attention to detail and intense focus,” Luetkehans said.

She calls it “embracing diversity of mind—seeing how their diverse ways of seeing and thinking about the world can be harnessed to solve some pretty big problems.”

Keep Reading: Autism Research Criss-crosses the Campus »

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Autism Research Criss-crosses the Campus

Psychologist Laura Knight with an autistic student

Depending on the age of the child, psychologist Laura Knight may use make-believe play as part of her autism assessment. Photo: Keith Boyer

Autism Research Criss-crosses the Campus

A number of IUP faculty members have been conducting research aimed at improving the lives of people with autism.

More than a decade ago, Teresa Shellenbarger, professor of nursing, wrote an article in the Journal of Emergency Nursing that gave emergency departments strategies for caring for patients with Asperger’s syndrome.

Although the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) replaced Asperger’s with the umbrella diagnosis of autism spectrum disorder in 2013, Asperger’s was previously considered a disorder on the higher functioning end of the autism spectrum.

Shellenbarger’s advice came from personal experience. Her son was diagnosed with Asperger’s at age five, and as a nurse, she closely observed how medical professionals treated him.

Her most important advice: Every person on the spectrum is different, and health care workers must adapt to meet those needs.

“Do they have a certain interest you can use? Are written instructions better than verbal? You can’t follow a strict routine,” she said. “You have to figure out what will work for that individual.”

Lou Pesci ’92, D’09 began thinking about the challenges of providing emergency care to people with autism when his son, who is on the spectrum, touched a hot pipe. Pesci said he and his wife “had a heck of a time figuring out what happened.”

Pesci is director of IUP’s Institute for Rural Health and Safety, which shares a building along West Pike with Citizens’ Ambulance Service, and he began exploring how much training on autism spectrum disorders emergency responders receive. He found half a page in the standard textbook.

Pesci contacted David Wachob ’05, M’09, D’12 in Kinesiology, Health, and Sport Science, and they partnered last spring on a survey of emergency responders to determine comfort and knowledge levels relating to autism.

Wachob was fresh off a study last year that showed promise in the use of morning physical activity to improve sleep in children with autism. His study, conducted with fellow faculty member David Lorenzi, was published last August in the Journal of Autism and Developmental Disorders.

Three centers at IUP do extensive work with autism and help train students along the way.

Laura Knight, who runs the child and family clinic in the Center for Applied Psychology, said autism is a question in about 75 percent of evaluations the clinic performs. Because pediatricians and early intervention services typically diagnose children with overt symptoms, she and her clinical psychology doctoral students tend to see children ages 6 to 12 with more subtle cases of autism.

Along with an IQ test, parent interview, and check of how the child manages daily living tasks, the evaluation includes the Autism Diagnostic Observation Schedule, an observational assessment Knight’s department considers the “gold standard” for measuring autism.

For younger children, the assessment is play based and may involve activities such as blowing bubbles. “The child may look at the bubbles and look at the person blowing bubbles, and that shares some pleasure,” Knight said. “When those things are absent, that can be an indicator.”

The Child Study Center, within the Educational and School Psychology Department, also evaluates for autism. Director Mark McGowan said his center’s evaluations focus on learning—“how students learn, what are the best practices in terms of teaching methods, and intervening with these kids in the educational system.”

The evaluations involve, in part, talking with teachers and staff members at the child’s school and observing the child in the classroom, on the playground, and in other school settings.

The center’s faculty members and graduate students also consult with families, school systems, and community service providers to help meet the needs of children on the spectrum.

Because autism is often associated with difficulties in communicating, many families seek treatment through the Speech, Language, and Hearing Clinic.

With preschool children, Lisa Price and her speech-language pathology students work on improving communication, even if that means pointing or gesturing.

She described two main treatment camps in the field. Applied behavior analysis, or behaviorism, uses a reward system to teach basic skills to people with autism, with the idea that those skills will help “pull them into this world” and learn to build relationships. In contrast, her specialty, social interactionist treatment, aims to “build the relationship first and allow the skills to emerge.” Most children benefit from having some of both treatment approaches, she said.

Price is also participating in a study that teaches peers of children with autism, either siblings or classmates, strategies to extend play. “We need other people in the child’s environment to be capable of embedding treatment,” she said.

Autism is often associated with poor eye contact, and where the eyes focus is a research interest of Psychology faculty member Lisa Newell.

Psychology faculty member Lisa Newell, right, and Shara Rosen ’16 studied where people’s eyes focus when they watch someone talk and how that focus may vary in people with autism.

Psychology faculty member Lisa Newell, right, and Shara Rosen ’16 studied where people’s eyes focus when they watch someone talk and how that focus may vary in people with autism. Their project is one of many across campus that address autism. Photo: Keith Boyer

This summer, Newell helped recent psychology honors graduate Shara Rosen use eye-tracking equipment to study the McGurk effect on people with autism. Discovered in the ’70s, the effect is created by mismatching audio and visual components of sounds. For example, when the sound “ba” is matched with lip movements for “ga,” most people hear “da.”

Newell said the blended phoneme is likely the result of people’s focus on the eyes and mouth. “There’s some evidence that individuals with autism don’t show as strong an effect. Our question is whether that’s because they’re not looking at the face in the same way typically developing people are.”

Another study at IUP this summer explores the effects of lighting on children with autism. Ali Kappel, assistant professor of special education, with help from Dean’s Associate Lynanne Black, has been working with Ohio-based Energy Focus to study whether changing from fluorescent to LED lighting improves the performance of students with autism.

Students in the study are from Crossroads, an afterschool program run by Family Behavioral Resources that works on social skills of Indiana County children with autism. The program has met on campus for nearly a year. This summer, Kappel tracked students’ off-task behaviors in the Stouffer Hall classroom before and after the lighting was switched. She expects to have results by early fall.

Kappel and Black worked with two IUP alumni on the project: Eric Hilliard ’94, president of Energy Focus, and Erica Walter ’08, M’10, clinical supervisor at Family Behavioral Resources.

As the incidence of autism has risen, so has the demand for qualified professionals in the field. IUP recently began offering an autism endorsement certificate, which provides specialized training for teachers, and is in the process of developing Board Certified Behavior Analyst and Board Certified Assistant Behavior Analyst certificate programs at the graduate and undergraduate levels, respectively.

Tim Runge, of the Educational and School Psychology faculty, is leading efforts to develop the graduate certificate program. He explained that schools and community agencies want to hire people with these credentials because they meet a national standard and because insurance companies are starting to require them.

For students in the School Psychology doctoral program, completing the BCBA course work could take as little as an extra semester, Runge said, and “it makes them far more employable and marketable. If I were working in a school district and had two PhD school psychologists applying for the same job, and one had this extra credential, I’d choose that one in a heartbeat.”

Organizers of the BCBA and BCaBA programs are hoping for a fall 2017 start.

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