Improving the Lives of Families

Kira Duley and her family
FROM LEFT to RIGHT: The MIND Institute (Medical Investigation of Neurodevelopmental Disorders) is a collaborative international research center, committed to helping families of individuals with neurodevelopmental disabilities, including autism. Kira Duley, who recently enjoyed a family day trip to Lake Chabot in Castro Valley, California, has autism spectrum disorder. She wears noise reducing headphones to help with her sensitivity to sound.
By Laura PIzzo
UC Davis researchers search tirelessly for solutions for families affected by autism

When 16-year-old Kira Duley wants to tell her mom how she’s feeling, she does a Google image search. For love, she points to a heart. For sad, a frowning emoji. For lonely, a photo of a woman standing alone on a beach, looking off into a sunset.

Kira communicates this way because she has autism spectrum disorder (ASD). Although autism presents itself differently in different people, 25 percent of people with autism—like Kira—do not develop spoken language.

“If she wants to tell me, ‘I want to eat something,’ it’s pretty easy, but any of the complex feelings that a 16-year-old  girl may be having, that’s where we’re stuck,” said her mother Nancy Brackner Duley, who serves on UC Davis MIND Institute’s Community Advisory Committee.

The Duleys have participated in several MIND Institute studies, as well as autism studies around the country. Many of these studies have been designed to understand the causes of autism rather than to develop treatments. Understanding the causes is necessary to developing the most effective treatments, which could one day benefit Kira and others with ASD.

Today, one in 68 children is diagnosed with ASD. And because autism presents itself in many different ways and is likely caused by hundreds of different genetic and environmental factors, it is extremely difficult to find treatments that work for each person, especially as their brains continue to develop and behaviors change throughout their lives. But at UC Davis, researchers with expertise in epidemiology, neuroscience, technology, education and more are tirelessly searching for solutions for families like the Duleys.

“Every day, children are in our clinics because they have a suspected autism diagnosis,” said MIND Institute Director Leonard Abbeduto. “Needless to say, the child is almost always there with Mom, with Dad, with little brothers and sisters, sometimes with an aunt or uncle and often with grandparents. And for me, that is a perfect example that this is not a diagnosis that resides in a child. This is a diagnosis that changes families forever. And that’s why we’re here.”

Finding individualized treatments that work

Professor Kimberley McAllister, who works at the Center for Neuroscience in the College of Biological Sciences, has studied autism for more than 15 years. Together with other UC Davis researchers, she has played a leading role in convincing scientists and clinicians worldwide that the immune system—along with genetics—can spark the development of autism in the brain.

“We don’t know what causes autism. There are over 100 different genes and many different types of environmental risk factors that have been linked to it,” explained McAllister, whose work is funded by philanthropy and government-issued grants. “And we don’t really know if autism is a single disorder. Of course we talk about it like it is, but if you know people affected by it, and have seen their range of behaviors and disabilities, you know it’s probably several disorders rolled into one name.”

Because autism is likely caused by so many different known and unknown factors, it is extremely difficult to discover new drugs to treat it.

“Some drugs will help a subset of people with a similar cause of their autism, but not others. So, when all of those people are included together in the same drug trial, the positive effects are washed out by the negative ones,” she said. “If we could identify subsets of people with autism that have a similar cause, we would make much more rapid progress in finding new and more effective treatments.”

McAllister’s research helps identify new targets for drug development by using animal models to determine which pathways in the brain, when disrupted, can lead to disease. Her work using mice has shown that activation of a pregnant mother’s immune system can cause changes in specific immune molecules in the offspring’s brain, leading to autism or schizophrenia-like behaviors. As the offspring grow up, those changes evolve, affecting how the subject responds to treatment.

“What is really exciting is that this work may lead to new therapies against those immune targets in the brain,” she said. “Currently, we are mostly limited to behavioral therapies for autism, which do not work for everyone, or which may not continue to work over time as an individual’s brain develops.”

New ways to teach and learn

In addition to investigating the causes of autism, UC Davis researchers are searching for new and more effective ways to improve the quality of life for people with autism, including creating more fulfilling educational opportunities for them.

Peter Mundy—who serves as the director of educational research and the Lisa Capp Endowed Chair at the MIND Institute—is an expert in the education and development of children with autism. As  such, he wanted to understand why children with autism were not succeeding in school despite the success of early identification and treatment programs that made it so nearly two-thirds of children with autism had sufficient language skills to enter general education classes.

His interest led him to study ways in which virtual reality tools could be used for classroom interventions. For this project, Mundy and his team conducted a study of 160 students ages 8-18, of which about half had been diagnosed with autism. The results led them to examine how social communication relates to reading comprehension.

“When we read, we have to focus on what the person who wrote the book is trying to tell us,” said Mundy. “Children with autism may not understand that at all because they have difficulty adopting a common focus with other people. This matters because if they’re falling behind in reading comprehension, they’re losing out on a lot of their educational experience.”

In fact, 68 percent of children with autism have IQ scores in the average or above range, but they often fall behind in school because their struggles with reading comprehension cause their writing and math skills to suffer as well. So Mundy’s team turned to Associate Professor Emily J. Solari in the School of Education— one of a handful of researchers nationally exploring how children’s reading difficulties might be related to problems with comprehending both oral and written language.

As director of UC Davis’ Reading and Academic Development Center, Solari was already developing a new type of reading curriculum to be used in the classroom by K-3 teachers to supplement their existing instruction for struggling readers. She had worked with children with autism in the past, so when she learned about Mundy’s ongoing study, she realized her curriculum could be adapted for this population. It just needed to be adjusted to support the development of social skills, so she reframed it as a two-teacher and two-student model that seamlessly included a social skills component. The results of the pilot study were so promising that the curriculum has since been moved into school settings.

“We’re seeing that the students are responding to this curriculum,” she said. “Even though the pilot programs were only eight weeks long, we saw gains in expressive vocabulary.”

How technology can improve quality of life

When Kira’s mom is asked why her family continues to participate in studies when they have so far failed to directly benefit Kira, she responds with the same hope that brings many of UC Davis’ researchers to work each day.

“Even though Kira hasn’t gotten any direct benefit from the studies thus far, it is still valuable to participate,” said Brackner Duley. “I want to understand what is going on, and—in doing so—if we could understand where this disorder comes from, well, would that lead to improvements in treatment? If we knew why this happened, couldwe do something more for her and others like her?”

With this same sentiment, the MIND Institute aims to expand the scope of autism treatment so it can better help teenagers like Kira— and as many people affected by autism as possible. Technology is making it easier to reach families all over the world with individualized treatments. For example, Abbeduto’s lab uses video teleconferencing to teach parents in real-time how to act as speech and language clinicians from the comfort of their own homes.

“The parents are learning really well; they feel empowered, and their children are making great progress in language,” Abbeduto said. “And with projects like this, I want us to make the most of technology to positively change lives for every family affected by autism. This is not just about early intervention—we need interventions at every point to optimize development and make services available and effective for everyone.”

Read more

The research presented in this article represents only a fraction of what is being done at UC Davis to improve the lives of all families affected by autism. Visit the MIND Institute’s website for more information.

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