UCLA education and health sciences professor takes her work out of the lab and into communities with outreach, information for families.
As a clinical researcher, education and health sciences professor Connie Kasari has made bringing autism treatment services to children and families in low-resource communities her life’s work. Along with researchers at UCLA’s Center for Autism Research and Treatment (CART), of which she is a founding member, Kasari has aimed to create effective treatment services for Autism Spectrum Disorder (ASD) that will work and sustain in real- world community settings.
Some maintain bringing in big money and hiring a lot of people is the way to create change when few resources are available, but Kasari says that just isn’t so. A successful initiative must be organic, she says, dependent on working collaboratively with a community partner and first finding and tapping into already existing manpower and resources, and using those to build a foundation of support.
“When it comes to creating real, long term change, the most important aspect has got to be sustainability,” says Kasari. “The work typically only lasts as long as funding is there, but the way to make things work long term is to find service providers in the community and train them and give them new tools so they can continue these practices long after we’ve gone.”
A neurodevelopmental disorder characterized by both social-communication impairment and restrictive and repetitive behaviors and interests, autism is a spectrum disorder – no two cases are alike, its symptoms and severity are different for each individual. Autism Spectrum Disorder afflicts one in 68 children, but boys are five times more likely to have the disorder. Symptoms of ASD may show in babies as young as 12 months, although most children receive a diagnosis by three to four years of age. Early intervention is essential, and can improve outcomes. Because of a lack of resources and information, however, African American children more often go without diagnosis until they’re six to eight years of age, which is well past the optimally early window of time when effective intervention should begin.
Although the cause of ASD is still largely unknown, children with autism may be minimally verbal or not speak at all. They may not respond to their name, make eye contact, smile, point, or make meaningful gestures, and they may demonstrate obsessive or repetitive patterned behavior. When symptoms are severe, it is disabling for children and deeply troubling for parents.
The U.S. Centers for Disease Control and Prevention reports that the number of children with the disorder has increased steadily since the CDC set up a monitoring system for ASD diagnoses more than a decade ago. Measured every two years, the CDC found that in 2010 one child in every 110 had ASD; in 2012 it jumped to one in 88 and currently holds at one in 68. Whites are diagnosed more frequently than other racial groups – among Whites, one child in 63 will have ASD, which is 30 percent higher than African Americans, and 50 percent higher than Latinos.
Kasari and her colleague, Amanda Gulsrud, an assistant professor of psychiatry and behavioral science, sought out Kenneth Wells, M.D., professor-in-residence at UCLA’s Jonathan and Karin Fielding School of Public Health. Wells had extensive experience with low resource communities on public health issues, using a longstanding practice model known as Community-Based Participatory Research (CBPR) to treat problems such as obesity, diabetes, and cancer. Dr. Wells also teaches a two-semester course on CBPR’s application, with a special focus on clinician academicians working with community leaders and organizations.
Over several years, Wells had collaborated with Loretta Jones, M.A., founder and C.E.O. of Healthy African American Families (HAAF) and an assistant professor at Charles R. Drew University of Medicine and Science, to bring health care services to South Los Angeles. Wells and Jones mentored Kasari, Gulsrud, and their group of autism researchers, including UCLA graduate student researchers and faculty, to guide them on how to use the practice model to build a culturally and ethnically sensitive community-based partnership to deliver ASD treatment services.
Not shy of a challenge, Kasari and her team enlisted in an eight-week long CBPR “boot camp” taught by Wells and Jones to learn the principles of building effective community partnerships so they could translate their research into practice. They attended twice monthly work groups with staff from Healthy African American Families, community stakeholders in South L.A., and other UCLA researchers and students.
Gulsrud, who is also clinical director of the Child and Adult Neurodevelopmental Clinic at UCLA, said that learning about their partners and getting enmeshed in the community was the first step.
“We went on walks together to understand and appreciate the character and diversity of the neighborhood, and we have ongoing work groups and are trying to understand what the community needs and wants, while we’re educating them about autism and early interventions,” she said. “As partners, we can write grants together and do interventions in the community, but what’s most important is that we have a shared vision and shared commitment.”
With Kasari leading the UCLA research team and Jones leading the interface with the South Los Angeles community, a partnership to implement the early stages of autism treatment services was in place. To formally launch the initiative, an Inaugural Autism Conference was held in October in South Los Angeles, funded by Autism Speaks and the Health Resources and Services Administration (HRSA) through the Autism Intervention Research Network for Behavioral Health (AIR-B). The conference helped researchers understand from the community’s perspective what the barriers are to accessing services in South Los Angeles, and enabled researchers to share their knowledge and information about ASD. In addition to yearly conferences, the community partnership plans to produce a series of local public service announcements to raise awareness about ASD, and identify where to go for help. Long-term, the project will focus on building partnerships with local treatment providers to expand sustainable treatment options in the community.
After all the work, research, and training, what really matters to Kasari and her colleagues is making a difference in someone’s life.
“It thrills our team to see even one little child do better,” says Kasari. “When a child is very impaired by their autism, little steps can make a big difference, and parents who have a child with special needs are happy to see even little steps, which are so important.”