With the dramatic rise of children diagnosed with autism spectrum disorder (ASD), the numbers and types of interventions promoted to families and individuals with autism have surged as well.
Aubyn Stahmer, associate professor of psychiatry and behavioral sciences at the UC Davis MIND Institute, emphasized the importance of characterizing and evaluating interventions for individuals with autism recently in the journal Autism. An expert in the translation of evidence-based autism treatment to community-based practice and delivery, Stahmer and colleagues Jessica Suhrheinrich and David Mandell make the case that, beyond general facts about services provided, researchers know very little about the types and quality of interventions being delivered to individuals with ASD in the community.
“There are ways to measure the quality of specific interventions, but often providers will combine interventions,” Stahmer said. “And we don’t know if doing that works or how to accurately measure the quality of these combined interventions.”
Stahmer argues that it’s essential for researchers to understand the quality of community interventions for multiple reasons. The first is to help tailor treatments to different subtypes of autism, which would lead to more effective treatment. The second is to help identify the necessity of each treatment component and its contribution to an intervention package to help simplify provider training. Finally, researchers need to measure the quality of care ASD patients receive, as there can be variability in service.
According to Stahmer, cities like Sacramento, which have research centers like the MIND Institute, tend to have more intensive treatment available. These resources can benefit both treatment research and biological studies of genetics and brain function. But if researchers don’t know what the interventions are or how they are being delivered, it’s challenging to know whether the progress ASD patients make in longitudinal studies is due to child characteristics, research interventions or community programs.
“If we are looking at biological markers to help determine which biomarkers predict success, it’s important to know what interventions are being done,” Stahmer said.
Researchers have been working with community providers to adapt interventions for use in the community. For example, Stahmer and the MIND Institute’s Sally Rogers are working with providers, administrators and parents in six states to adapt the Parent-Early Start Denver Model (P-ESDM) for use in rural and under-resourced areas. Working with community members to adapt evidence-based strategies and ways to measure the accuracy of their use of the treatments has led to increased quality in recent studies.
Researchers are trying to develop a cost-effective way to track an intervention’s success. One possibility is to develop checklists for providers to ensure they are adhering to each component of an intervention.
“Developing methods for measuring quality indicators in care for ASD across different services and interventions will require a targeted and coordinated effort among intervention researchers of different disciplines and community members,” Stahmer said.
Other authors on Stahmer’s Autism editorial include Jessica Suhrheinrich of the Child and Adolescent Services Research Center and Department of Psychiatry, School of Medicine, UC San Diego and David Mandell of the Center for Mental Health Policy and Services Research & Department of Psychiatry and Pediatrics, Perlman School of Medicine, University of Pennsylvania.