Story by Margie Peterson & Artwork by Gracia Liam
In the face of enormous need for effective treatment services for children with autism, Lehigh University is opening an Autism Clinic that will use state-of-the-art methods to help these youngsters gain language skills and improve how they interact with others.
Faculty and graduate students in the university’s new Applied Behavior Analysis (ABA) program under the College of Education will provide evidence-based intervention techniques for preschoolers in the region.
Slated to open in January at the university’s Iacocca Hall, the clinic is the brainchild of Gary Sasso, dean of the College of Education, and Lee Kern, director of Lehigh’s Center for Promoting Research to Practice.
Soon after Sasso talked to the university’s Board of Trustees about plans for the clinic, he was getting calls from parents who had heard about it and hoped to get help for their children.
“The need is incredible here in the Lehigh Valley,” Sasso said. “Nobody is going to do it on the scale or with the expertise that we’re going to be able to bring to it. What we’re most worried about is having too many people to serve. So we’ll start off a little bit slow and then expand it as much as we can.”
Research shows that the right kind of early intervention can help children with autism spectrum disorder make great strides, Kern said.
“We know there’s a huge need, and we also know that intervention can be highly effective,” she said. “So many children, if they get early intervention, can be indistinguishable from their peers as they age.”
That should give hope to parents who have been blindsided by their child’s autism diagnosis, said Lehigh alumna Pam Kattouf ’88, of Maplewood, N.J., who has a 16-year-old autistic son.
“You want to get your child intervention right away but it can be months upon months to get any services,” Kattouf said. “There are huge waiting lists.”
Parents desperate to get their children help sometimes resort to “unproven therapies that can be dangerous,” Kattouf said.
Sasso has examined numerous types of treatments for autism and found scores of sham methods that show no evidence they work.
“You’re going to do anything to help your kid, and folks have taken advantage of that,” Sasso said. “They’ve come up with things that are not only not effective, but in many ways counter-therapeutic.”
The good news is that applied behavior analysis has been shown to be effective.
“Everything we do with families and children is going to be linked to best practice,” Kern said. “Because we’re involved in research, we know what is emerging in the field as far as best practices.”
Lehigh’s applied behavior analysis courses, which began over Summer 2017, will allow graduate students to work toward a board-certified behavior analyst (BCBA) certificate. Those who complete the prescribed six courses, including such subjects as “Autism Spectrum Disorders and Evidence-Based Practices” and “Positive Behavior Support” and accrue 1,000 hours of supervised practical experience will be eligible to take the BCBA examination. Under the supervision of faculty and BCBA-certified therapists, those graduate students will work with autistic children at the new clinic.
“Applied behavior analysis is the most successful approach for reducing the symptoms of autism,” Kern said. “We’re expanding that approach a little bit because it can be kind of rigid. We don’t believe that we should be using procedures that are humiliating or stigmatizing or painful. Our field is moving away from that but still tends to be punitive with children, and that’s not our philosophy. We need to teach and encourage children to behave in socially appropriate ways rather than punishing them for not doing so.”
Helping Parents Help Their Children
Kern said a key part of the services Lehigh’s clinic will offer is teaching parents how to work with their children to develop language and other communication skills.
“With kids with autism, a lot of times they will lead parents by the hand and take them to where they want them, and they don’t have to use language,” she said. “So we need to get them to understand that if you want something, you’re going to need to use language.”
The Autism Clinic plans to accept reimbursement for services from families’ insurance plans, medical assistance and the state of Pennsylvania's Children’s Health Insurance Program (CHIP). Pennsylvania’s Act 62 mandates that insurance and those state programs pay for services for children with autism.
Kern is fortunate to have an adept adviser for starting the Autism Clinic—her sister Lynn Koegel, who with her husband, Robert Koegel, ran the Koegel Autism Center at University of California Santa Barbara for decades. The Koegels recently accepted positions at Stanford University. Lynn Koegel will be a clinical professor at Stanford University School of Medicine.
She spoke at a workshop at Lehigh in April 2017 on the use of Pivotal Response Treatment in working with children with autism. Developed by the Koegels, Pivotal Response Treatment teaches parents how to interact with their children in daily life to improve their language skills and contact with others and decrease disruptive and self-stimulatory behavior using motivational strategies.
Koegel said her clinic found that if it started working with non-verbal children before age 3, about 95 percent of them gained language skills.
“If we start work between 3 and 5, it’s about 85-90 percent,” Koegel said. “After 5, if they come to us and have zero words, it’s about 20 percent. So we really like to get them started with early intervention.”
The Centers for Disease Control reported in 2016 that only 43 percent of children identified with autism had received the diagnosis by age 3.
“The most powerful tool we have right now to make a difference in the lives of children with [autism] is early identification,” said Dr. Stuart K. Shapira, chief medical officer for the CDC’s National Center on Birth Defects and Developmental Disabilities.
Typically, behavior associated with autism is noticeable when the child is a toddler. Intervention should start soon after diagnosis.
“Parents usually notice their children are having language delays,” Kern said. “That’s a big signal. Sometimes the children will start talking and then lose that speech. There are also social challenges. They don’t interact with their siblings or other children like you would expect. They also tend to engage in repetitive behaviors and often have a restricted range of interests.”
There are no definitive answers on what causes autism but a genetic component appears to be involved. Autism is more likely to be found in identical twins than fraternal twins and to run in families. Older parents are more apt to have children with autism. Five times as many boys have autism as do girls.
The reported numbers of children with autism increased substantially in the last couple of decades. In 2000, the CDC found that about 1 in 150 children had autism, and by 2008, that ratio had risen to 1 in 88 children. By 2016, the CDC said 1 in 68 kids had some form of autism spectrum disorder.
So are there more children with autism today than 20 years ago or is the medical community just better at recognizing it?
“Probably both,” said Kern. “We are definitely getting better at identifying autism. I have parents all the time tell me they were that way when they were young but they were just considered a little quirky.”
But Kern also believes there has been an actual increase in the number of children with autism.
“There’s a lot of research going on, but there are not definite explanations yet,” she said.
In 1943, Leo Kanner, a child psychiatrist at Johns Hopkins University School of Medicine in Baltimore, was credited with being the first to describe children who avoided socializing with other people, engaged in repetitive behavior, needed routine and had tantrums when routines were disrupted. He labeled the condition infantile autism.
Sasso, Kern and the Koegels have seen major shifts in thinking and treatment surrounding autism over the last several decades.
“At that time, back in the ‘70s, they said children with autism were uneducable and wouldn’t let them go to public school,” Lynn Koegel said. Robert Koegel didn’t believe in that philosophy and he was awarded a large grant to start the first public school classroom in California for children with autism.
Early treatments often focused on punishing the children for their behavior.
“A lot of time the punishment got really severe, where it was like electric shock or really aversive treatments like water sprays in the face and lemon sprays in the mouth. It was really awful for the kids,” said Lynn Koegel, who began working in the field in the late 1970s.
It was around that time that Sasso, the Koegels and others started looking for alternatives to such punitive techniques.
“We started looking at their behavior not in terms of whether it was bad or good, but we tried to understand from kids who were not very verbal what their behavior was trying to communicate,” Sasso said. “If we could figure out what they were trying to communicate to us then we could teach them a more effective way to say those things.”
The Koegels created treatment that works to motivate children to use language to describe what they want and to interact appropriately with others. Pivotal response training can lower the stress in families while integrating the lessons in regular activities.
So, for example, if a child likes to ride in a car, the parent would shake the keys and the child would have to say “go” or “ride” to get to go in the car.
“With these motivational procedures, when the parents implement them, their stress actually goes down because they just do it within their everyday activities,” Lynn Koegel said.
Lehigh’s Autism Clinic plans to accept young children who are already diagnosed with autism.
“Hopefully, we’ll expand to school-age children, adolescents and even adults,” Kern said. “But that’s down the road.”
Brenna K. Wood, associate professor of Special Education, will direct the Autism Clinic. Lehigh has faculty members and graduate students engaged in autism research, and they will be able to pass on their expertise to families coming to the clinic and learn from them in return.
Sasso said the Autism Clinic will be a great fit for Lehigh’s College of Education, which has several experts in autism on its faculty and a strong focus on helping people with disabilities.
“We want to create new knowledge, we want to train the best folks and send them out there to do the kinds of things that will help kids the most,” he said. “But on top of that we also want to be responsive to not only our neighbors but to the country in terms of disseminating our knowledge.”
One Family's Story
Justin was almost a year old when his mother, Lehigh alumna Pam Kattouf ’88, started noticing he was not progressing like his older brother Steven, and Justin even started losing skills at imitating people.
“He stopped responding to his name,” said Kattouf. “He started to gain stereotypical [autistic] and repetitive behavior.”
She and her husband, Jonathan, took Justin to be evaluated by three doctors. The first one diagnosed autism and told her that her son couldn’t feel any love for his family.
“My husband and I walked out utterly devastated,” she said.
It was the third doctor who assured them that the autism diagnosis wasn’t “a death sentence,” and her son would progress if they got him into intervention services called applied behavior analysis (ABA).
Though at times it was a struggle to get the services, Kattouf became such a convert that she went back to school and earned her own board-certified behavior analyst certification to make sure Justin got the best help.
“If he did not have ABA I can’t imagine what his life would be like or what our family would be like,” Kattouf said. “ABA has provided him with academics, social, the speech aspect…every part of his life that he’s working on is through an ABA framework. It’s given us the tools to most effectively help Justin to be the most independent, happy person that he can be.”
Now 16, Justin lives with his family and still needs services but is able to do normal activities, such as go to the gym to work out with someone, do supervised tasks and ask for things he wants. He gets excited when he sees his pal Johnny and makes comments such as “this is fun” and “I love you” to his family.
Currently, Kattouf is working to set up a soap-making business with a friend whose son also has autism as a way of providing employment for their sons and others with autism.
“Instead of people with autism just getting services, they can be performing services,” she said. But, she says, early intervention with applied behavior analysis was the key and she’s thrilled to hear Lehigh is starting an Autism Clinic that will offer those methods.
“I’ve seen nothing short of miraculous changes due to great intervention,” Kattouf said. “I’m excited for the Lehigh Valley community because I know what it’s like to not have services, to not have good services.”