The difference is dramatic.
In the first video, a high school student with Autism Spectrum Disorder (ASD) sits at the end of a lunch table separated from two peers without autism by a few feet and a gaping canyon in the level of social skills.
The conversation about classes and teachers goes on around her while she silently fidgets with her hair, responding briefly to a question or two from her fellow students. The awkwardness is palpable.
But in a video taken about four months later, the same teen with autism is asking typical peers appropriate questions and making fitting follow-up observations and inquiries.
What took place in between the two videos is the subject of groundbreaking research by Linda M. Bambara and Christine L. Cole, who have been working since 2012 on how to facilitate conversation between teens with autism and their typical peers and ultimately, how to give students on the autism spectrum the social skills they will need for work and life.
The stakes are high. Conversational skills are the building blocks of human interaction and will affect whether the teens are able to make friends, get jobs and keep them, as well as nearly all other aspects of their daily lives. A student who has trouble communicating with peers becomes increasingly isolated and that can lead to loneliness, depression and anxiety, Cole and Bambara say.
Children with Autism Spectrum Disorder usually have difficulty talking and interacting with others, and they display repetitive behaviors focusing on limited interests, according to the National Institute of Mental Health.
Teaching them how to initiate conversation and listen, to ask follow-up questions and make appropriate comments helps students with autism gain confidence and a lifeline into a world that has largely eluded them, the researchers say.
“The effect is pretty dramatic because students with autism learn how powerful it can be that they can actually direct a conversation that peers are responding to, and suddenly they see the beauty of what social interaction is all about,” Bambara, professor and program director of special education, says. “It is powerful for the kids to see they can engage their peers.”
Bambara and Cole, professor of school psychology, say most research conducted elsewhere on improving conversational skills for children with autism has focused on helping younger kids. Cole and Bambara are on the forefront of working with high school students. They have presented their findings at conferences including the Association for Behavior Analysis International in Paris last November and the American Speech-Language-Hearing Association in Philadelphia in November 2016.
The field of autism research has expanded as the numbers of children diagnosed with ASD increased over the past couple decades. In 2000, the Centers for Disease Control estimated that about 1 in 150 children had autism and by 2008, those numbers grew to 1 in 88. In 2012, the CDC said 1 in 68 children had ASD, and that number has held in the surveys it has given every two years since then.
So are more kids developing autism or is the medical community just improving its ability to diagnose those on the spectrum?
Lee Kern, professor of special education and director of Lehigh’s Center for Promoting Research to Practice, says it’s likely both are true. Professionals in the field are getting better at identifying autism, but Kern also believes there has been an actual increase in children with autism.
No one can say definitively what causes ASD, but genetics appear to play a part. Five times as many boys have autism as do girls. Autism is more likely to be diagnosed in identical twins than fraternal twins and can run in families. Older parents are more apt to have kids with ASD.
Signs of autism often can be detected in children 18 months or younger and by age 2, a diagnosis by a professional in the field is usually considered reliable, according to the CDC.
People who were once diagnosed with Asperger’s Syndrome are now considered to have high-functioning autism. They usually have average or high IQs but have difficulty connecting with people.
Bambara and Cole launched their research in 2012 with a $120,000 grant from Autism Speaks, a nonprofit education and advocacy organization. As the principal investigators, the two formed a research team of special education and school psychology doctoral students, including Jacqueline Chovanes, Alana Telesford, Amanda Thomas, Irem Bilgili, and also Shu-Chen Tsai and Elizabeth Ayad, who have since graduated and moved on.
Initially, the team concentrated its efforts on training typical students at William Allen High School in Allentown, Pa., in how to carry on conversations with teens with both intellectual disabilities and autism.
“What we found out is just teaching peers alone is not really going to change the conversation skills for students with autism,” Bambara says. “They may get involved in more conversation because if I’m the peer I can ask you a lot of questions and you might be responsive to me, but it doesn’t really get the student with autism to initiate or ask more questions.”
So in the next study, they worked with typical peers but also taught small groups of teens with autism—the focus students—how to make appropriate remarks and ask questions, initially using visual support cards to which they could refer.
“We train the peers that when the conversation dies to just pause and wait,” Bambara says. “That’s a natural cue. Meanwhile the focus students already have this little card written out about topics they want to talk about. They look down at this card and they may say: ‘I’m getting a new pair of eyeglasses.’ The peer is now taught to respond: ‘Wow, that’s really neat. Did you choose your frames yet?’”
The sessions, which the team recorded, took place over lunch periods in the high school. The students with autism eventually became comfortable enough with conversation that they no longer needed to practice beforehand or refer to the support cards when talking with peers.
“In one of our studies we were able to fade the use of the card completely,” Bambara says. “We were able to get kids who were pretty passive and withdrawn initiating conversations, asking their peers questions, commenting on what they had to say. The overall rate of conversation went really high. They were engaging in longer, on-topic discussions as well.”
Results of their research have been published in such journals as Research in Autism Spectrum Disorders. Also publishing in school practitioner journals, they are translating their research to practice for special educators and speech language professionals.
The students’ high school teachers told Bambara and Cole that they saw tremendous differences in the kids on the autism spectrum. One of the stereotypes of people with autism is that they don’t want to interact with others, but the professors found that though the teens might be nervous about talking to other kids, they mostly wanted to.
“They probably have had so many negative experiences over the years trying to interact, it’s understandable why they have this barrier, these negative emotions, anxiety, resistance to wanting to interact,” Cole says. “But once we give them the tools, they usually blossom.”
“Peers rated the intervention highly; they liked it,” Bambara says. The typical peers of one teen in the focus group said by the end of the intervention, they couldn’t tell they were talking to a student with autism.
The bigger question is how to integrate the intervention efforts throughout school systems so children nationwide can benefit.
Cole says they would like to eventually create a manual so schools all over could implement a program like it for students with autism and their typical peers.
Brenna Wood, associate professor of special education, has been working with lead researcher Robin Hojnoski, associate professor of school psychology, on a data tool that will allow educators of young children to collect information about a preschooler's behavior to help plan a way to intervene in problem behaviors. It has entailed visiting preschool settings around the Lehigh Valley and observation in classrooms.
“My research now is on positive behavior supports,” says Wood. “My focus is identifying why the behavior is occurring and implementing strategies. You’re doing your detective work. So is the child engaging in the task or are there behaviors that are interfering—are they throwing a tantrum, are they staring out the window rather than engaging in the activity?”
For example, Wood observed a preschooler with autism who was in an inclusive classroom and would wander around while all the other students were engaged in a table activity.
“At that time I used a different observation method to collect data on those behaviors and then implement an intervention,” she says. “So I had baseline data, a snapshot of what typically happens.”
The data tool she is working on with Hojnoski is not specifically geared toward children with autism but Wood sees the possibilities for using it with kids on the spectrum.
“What we’re hoping to do is to be able to teach preschool teachers how to use these strategies within their own classrooms,” she says. “Right now, we’re just developing a pilot study for general preschool teachers.”
The field of autism services has come a long way since the 1988 movie Rain Man, which introduced many Americans to the subject of autism.
Wood was inspired to go into the special education field after she worked with a child with autism when she was a high school student teaching swimming in Portland, Ore., in the late 1980s.
“All I knew of autism was Rain Man,” Wood recalls. She had no training in working with children with disabilities but realized quickly that standard methods wouldn’t work with a young boy named Jonathan.
“With Jonathan, I had to really rethink everything I had been taught,” she says. “My whole teaching philosophy is based on that experience in the sense that you have to truly see the individual to be able to understand what their needs are. That’s why I’m here today.”
Kern and Wood are among the Lehigh faculty who plan to use their expertise to help families of children with autism at the University’s new Autism Services center, located in Iacocca Hall on Lehigh’s Mountaintop campus. The center is initially working primarily with children ages 5 and younger. In addition to utilizing existing faculty expertise, the Autism Services center is tapping into Lehigh’s new Applied Behavior Analysis (ABA) program to provide evidence-based services for children with autism to improve their language abilities and other life skills.
The center is the creation of Kern and Gary Sasso, dean of the College of Education. This spring, Autism Services is running a pilot program for families of a small group of preschoolers and plans to expand the number of children and treatment after that.
“There are so many children with autism who either don’t receive the services they need or receive services that are inadequate,” Sasso says. “We are creating a clinic that is designed to provide state-of-the-art best practices interventions not only for kids with autism but for their families because a lot of this is going to happen within the home.”
“We’ve already received enormous interest,” Kern says. “We know there are so many families that need help. We really need to start small.”
Lehigh’s Autism Services center will use Applied Behavior Analysis but will emphasize positive supports rather than punishment in its practice, Kern says. The old approach sometimes incorporated aversive measures to stop problem behavior.
One cutting edge method is called Pivotal Response Training, which was developed by Kern’s sister, Lynn Koegel, and her husband Robert Koegel, while they were running the Koegel Autism Center at the University of California, Santa Barbara. In April 2017, Lynn Koegel taught a workshop at Lehigh on using Pivotal Response Training to motivate children with autism to learn language and other skills. The Koegels have since taken positions at Stanford University, and Sasso expects Lehigh’s autism center to collaborate with the Koegels on joint research projects.
“Our technique is to try to understand why problem behaviors occur and to teach children alternative appropriate behavior,” Kern says. “What we do now is we encourage communication by motivating this child to speak so we try to identify things the child enjoys doing. If the child enjoys pop-up toys, we would coax that child to name that toy and then allow him or her to play with the toy, which would be naturally reinforcing.”
For those in the field, the new center is an opportunity to collaborate with experts to develop interventions and aids that can change lives.
“A clinical program is just a really fertile environment for behavior analytic research,” Sasso says. “It brings a lot of energy and thoughtfulness regarding how you can do these things better so we can move the field forward.”
Wood, who is a Board Certified Behavior Analyst (BCBA), will serve as director of the Autism Services center, which is staffed by faculty and graduate students at the College of Education. Students with a master’s degree in an appropriate field can take six courses that have been verified by the Behavior Analyst Certification Board (BACB) as meeting the course requirements for students pursuing their BCBA. The six courses can also be taken as part of a student’s pursuit of a master’s degree in special education.
Those grad students will also need 750-1500 hours of supervised practical experience before they can apply to take the BCBA exam. Lehigh’s Behavior Analysis program started last year and is already rated by AppliedBehaviorAnalysisEdu.org as one of the top 62 online programs in the country.
Autism Services expects to accept reimbursement for treatment from families’ insurance plans, medical assistance and the Children’s Health Insurance Program (CHIP) in Pennsylvania. State law requires that insurance and those state programs pay for services for kids with ASD.
The three treatment rooms in the center have insulated walls to cut down on noise and video cameras to record the sessions. That will enable graduate students and faculty working with each child to review the effectiveness of the treatment, which can help advance research on new treatments and methods.
Sasso is especially adamant about the importance of evidence-based services because he has studied therapies that don’t work and has seen the damage they can do. For example, facilitated communication—where a facilitator guides the hand of a nonverbal person on a keyboard so they can type their thoughts—has been discredited after giving hope to many families when it caught on in the United States and Canada in the early 1990s.
“Facilitated communication turned out to be a big scam and really hurt the field and hurt a lot of kids because it was not something that worked at all and it wasted a whole lot of time when kids can be treated in a more effective manner,” he says.
Some of the center’s treatment services will be performed in the homes of families so the skills the children learn can be applied in natural settings.
“We found that children have a lot of trouble generalizing those skills,” Kern says. “So if you say ‘car’ and you have an array of six pictures, they might be able to point to the car, but if you go out to the parking lot, they can’t tell you what a car is. We’ll go into the homes and work with the children, parents and siblings, coaching them on techniques they can use with their child.”
That sounded like a godsend to one parent of an 8-year-old boy who contacted Kern when she heard about the autism center opening. “Pretty much everywhere you go there are waiting lists,” the mother said. “Navigating all this has been difficult.”
Written by Margie Peterson
Illustration by Gracia Lam