Latha Soorya’s first job in college had a profound impact on the path of her life. Rather than delivering pizzas or serving burgers, Soorya worked as an in-home therapist for a young boy with autism. Soorya, now research director at the Autism Assessment, Research, Treatment and Services (AARTS) Center at Rush University in Chicago, recalls that he was quite withdrawn, interacting little with his siblings and parents.
The therapy team began with applied behavioral analysis (ABA), a type of therapy often used in autism. Initially, they had trouble even getting the boy into the therapy room. But within a couple of months, he was sitting through an hour-long lesson and learning to express concepts such as numbers and colors.
“Within six months, we saw a remarkable difference in his ability to interact,” Soorya says. “The whole family dynamic changed.” The boy eventually began speaking and attending some mainstream classes.
The experience of seeing firsthand the profound impact of a behavioral intervention inspired her to study psychology and to try to improve interventions for all people with autism. “ABA is an imperfect intervention, but it’s a set of strategies that have made changes in people’s lives,” Soorya says. “I do intervention work to refine interventions and make them better, to make them more accessible, to understand who they work for and to get them into the hands of people who need them.”
Soorya and collaborators at Rush are investigating a range of behavioral therapies. These include naturalistic developmental behavioral intervention (NBDI), a variation of ABA that emphasizes using a child’s cues and situations that are naturally rewarding to build social and communication skills. Reciprocal imitation training, which takes advantage of the power of imitation as an early social learning tool, is one type of NBDI.
The researchers are also studying whether some therapies can be delivered remotely, through a telehealth platform. Allie Wainer and collaborators at Rush are exploring the use of websites and remote video coaching, using apps similar to Skype, to help parents learn and use evidence-based strategies at home during daily play and other activities. The goal is to reach families who might not otherwise be able to access interventions either while they are waiting for other therapies or in addition to them.
“Kids are getting screened for autism and then stuck on wait lists,” Soorya says. “We have families who could benefit if they had access to therapy while they are waiting for services to be initiated.”
The first work Soorya did as an undergrad with a person with autism had a positive outcome. But not all her cases worked out so well. She recalls sometimes making progress in certain skills, only to see them quickly fade away. “Looking back, we didn’t see generalization of skills. We couldn’t get past a certain point in learning,” she says.
In other instances, it was hard to find something to motivate a particular child. “We would go through the entire toolbox and couldn’t figure out what makes them tick,” she says. “Now I wonder, if we understood more about the genetic makeup of certain kids, whether we would start to understand whether that type of behavioral therapy is the right one.”
That’s one reason Soorya joined SPARK. Its large size — as of June 2018, over 120,000 people have enrolled in SPARK to date — will potentially help researchers figure out whether certain groups might benefit from different treatments. “To think that only one treatment would work is misplaced,” she says. “We are looking at building complex interventions that might incorporate drugs and behavioral therapies.”
Soorya is particularly excited by SPARK’s research matching program, which helps connect scientists with families who want to participate in research. “It’s hard to get families to engage in research. They are busy, burdened by care for someone with a chronic condition,” Soorya says. “To have a resource for researchers to reach out to families who already have some interest really helps with some of the studies we are doing at Rush.”
Soorya and collaborators are now using SPARK to enroll participants in a study that combines two treatments: intranasal oxytocin, a hormone therapy thought to enhance social communication, and a behavioral therapy called social cognitive skills group training.
Oxytocin therapy has had mixed results in existing studies. Researchers hope that combining it with behavioral therapy will boost its benefit and promote social learning. (For more on oxytocin and autism, see ‘Oxytocin’s promise for autism’ and ‘Oxytocin spray boosts social skills in children with autism’ from Spectrum, an independent news site funded by the Simons Foundation.)
Intervention studies like this one are of great interest to families. But they are also challenging and expensive. “Without a platform like SPARK, we don’t have the resources to reach enough people for some of these studies,” she says.
SERVING THE UNDERSERVED
Soorya is South Asian. She recalls that when she was growing up, several family friends had children with autism. That experience highlighted how different ethnic groups deal with an autism diagnosis. “In some cultures, it’s common to hide the issue. Many immigrants came here because of educational achievements, so to have a child with a disability was clearly challenging,” she says. “There can also be a sort of an acceptance — this is our karma. Or in some cases denial.” The responses can be complex and sometimes hinder families from accessing interventions and other resources.
Part of Soorya’s work focuses on trying to improve access to interventions among underserved populations. “Working in diverse cities like New York and Chicago, I’ve seen families of individuals with ASD find support in many different ways, including culture-specific autism parent support networks,” she says. “I think there is growing attention to cultural differences in every aspect of research in autism — it’s an important place for autism research to be moving.”
Her team makes an effort to reach out to autism parent groups in Chicago serving largely African-American and Latino communities. Among other things, the team keeps the communities up to date on the center’s services. “I think these efforts are the reason for our success in recruiting ethnically diverse and representative samples in our intervention trials,” she says.
In a recent pilot study of a telehealth program, 73 percent of participants were from underrepresented minority groups. “We’d like to see similar representation in biomedical research and are working to understand barriers and effective outreach strategies to improve representation here,” she says.