Making a difference for individuals with autism

Autism expert helps autistic youths transition into adulthood

During a recent trip to Taiwan, Carol Schall, Ph.D., was struck with awe and admiration for a young artist and his one-of-a-kind artwork. Vibrant, bold colors transformed the scenes depicted in his drawings and paintings. Each masterpiece is full of detail and depth – storytelling on canvas at its best. His art has come to be his way of communicating with a world he himself cannot completely connect with.

The artist, Leland Lee, is autistic. He was diagnosed when he was just a toddler. While he has faced significant challenges, it also has allowed him to connect with his talent and strength.

Now, in his mid-twenties, he continues to endure many of the challenges that have plagued him all his life. He’s unsure of new situations – unable to calm himself and self-regulate. He also experiences sleep disruptions and has social communication deficits.

His mother is often by his side to answer his questions and help put him at ease. Learning how to better understand and help her son as the years have passed has been no easy task.

But, through interaction with Schall, an autism expert who has been learning from and supporting individuals with the condition for more than 25 years, both mother and son have gained some valuable new tools.

“I was able to find ways to successfully interact with him – he started to use the supports that I was providing for him to really help him calm down,” said Schall, director of technical assistance at the Virginia Commonwealth University Autism Center for Excellence. “I feel fortunate to have been there.”

Schall, who is well-known for her work assisting adolescents with autism transition into adulthood, was invited by Autism Speaks to meet with an international group of experts, families and policy makers during a five-day trip to Taiwan. Autism Speaks is an international autism science and advocacy organization.

While in Taipei, Schall, who also serves as director of the Virginia Autism Resource Center at the VCU Autism Center of Excellence, shared information based on the research her team at VCU has conducted about autism and employment. She presented data from Project SEARCH, a program that provides job support for teens with autism and helps them become employed. She discussed behavior in individuals with autism, and how the Project SEARCH program offers behavior support to help participants become more successful on the job.

In other work, Schall is developing tools for parents of children in middle and high school to help families learn about the functional skills that their children need to be successful in the future. The project is supported by a grant from Autism Speaks.

Life with autism

Families of children with autism are faced with challenges at every point throughout their child’s development – starting with diagnosis and leading to finding the appropriate services for their child.
Daily life with an autistic child can be a struggle.

One of the ways Schall explains these challenges is to ask people to consider a child with a vision or hearing impairment – there are times when that child’s disability impacts their parent’s interaction with them. But other than those times that are directly related to seeing or hearing, there are numerous times when that child is able to just be a child. The vision impairment is secondary to that interaction.

“When you have a child with autism, autism is in the middle of everything. When you try to read a story with your child, they don’t like to be hugged, or don’t like the smell of your perfume, or don’t like the feel of your itchy clothing on their body, so they are wiggling away from you,” she said.

“Autism really changes that parent-child interaction. All of the intuitive senses of how to be with children, how to comfort children, how to support children – all of those senses do not serve parents well when they have a child with autism.”

But by providing parents, teachers and caregivers with the appropriate knowledge and tools, Schall is advancing understanding of the condition and providing tools to help autistic individuals and their families flourish.

Another aspect of her work is to teach schools how to serve individuals with autism across the spectrum and across ages. Individuals who have challenges with their communications abilities still have significant challenges in terms of their social development and social interaction. Understanding these important factors could considerably change the approach to teaching students with autism.

Transitioning to adulthood

The goal of Schall’s research is to build supportive job coaching experiences for individuals with autism so that they can be successful as young adults in the workplace. Schall’s team is working on that from a number of different perspectives, including trying to find ways to support individuals who demonstrate behavior challenges at work.

Many of the challenges observed in this population stem from social communication deficits.

“A person with autism doesn’t have the ability to really identify states where they might need some help or assistance. They do not necessarily have skills to help themselves identify how to best to regulate their emotions,” Schall said.

Schall and her team have had success teaching a number of adults with autism how to monitor their own behavior through schedules, picture menus and key words. These structures help autistic individuals determine when they may need a break or need help with the task at hand. By identifying when they need help, they are less likely to reach their breaking point – when they become frustrated and upset.

“We do a lot of work around teaching individuals how to cope with their behavior challenges,” Schall said. “We’ll write programs for individuals where they have the opportunity to note their challenges and ask for help. Those same tools can be used to help remind them that they need to take a break, or what behaviors they need to demonstrate at various times throughout their day at work.”

On the job

Following high school graduation only 6 to 11 percent of individuals with autism are competitively employed, Schall said.

“What we are hoping to show through our research is that the low competitive employment is not due to the disability, but the lack of support,” Schall said.

“What we’re demonstrating is that individuals with autism have tremendous gifts to offer in the workplace. And those gifts are being missed because we are relying on antiquated support structures and ways of interviewing.”

According to Schall, youth with autism interview poorly due to their social communication deficits. But once they are in a work environment with the right supports and learn how to interact with people in that workplace, they can learn a job and become skilled, independent and productive. Their most challenging aspects begin to fade away.

“We are learning a lot about how to best support individuals with autism in the workplace, but we are also learning that work may act as its own ‘treatment’ for individuals with autism. Because they’re interacting with individuals they can continue to grow and develop as adults as well,” Schall said.

Global awareness

While Schall was overseas, she was fortunate to view the Taipei 101 building, a landmark skyscraper in Taiwan, illuminated with blue light. The effort was part of the international autism community’s World Autism Awareness Day. Each April, many iconic landmarks, hotels, sporting venues and other locations around the globe take part in Autism Speaks’ Light It Up Blue initiative.

For Schall, this was inspiring to see and illustrates the great strides made so far in autism research and knowledge on a global scale.

“There is every reason to have tremendous hope about serving individuals with autism. Hope in the future, hope in employment, and hope we’ll have the tools to meet their children’s needs. I want to provide hope all the way around,” she said.


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Carol Schall, director of technical assistance, VCU-ACE
Carol Schall, director of technical assistance, VCU-ACE
Artwork by Leland Lee
Artwork by Leland Lee