Posted by Amy Daniels, Ph.D., Autism Speaks assistant director of public health research
We know that autism doesn’t discriminate based on geography, income, race or ethnicity. We also know there are great disparities in access to care in this country. This is especially true among the poor and minority families as well as those who live far from treatment centers. Why is this? What role can autism researchers play to close this unacceptable treatment gap?
On the final day of the International Meeting for Autism Research (IMFAR), I attended a symposium entitled “Rethinking Interventions and Implementation Strategies for Under-Resourced Areas.” There, four renowned researchers attempted to answer these questions. They agreed that community involvement is the most important ingredient to community-based research. It is important that researchers develop close partnerships with the communities they are trying to help. Community involvement helps ensure that a program reaches the community. It also helps ensure that the benefits of these interventions remain long after the researchers have left.
The first presentation was titled “Parent Mediated Interventions; What Works, What Doesn’t?” The presenter, Cathy Lord, Ph.D., spoke candidly about how little we know about effective interventions for minorities and the poor. Dr. Lord spoke about the challenges of conducting intervention research with parents who have relatively few opportunities to put training into practice because of their daily struggle to provide for their children’s basic needs. There is no question that parents need to play a central role in the care of children with autism. This question is how we help them do this while considering their situations. This remains a huge question for the research community and a priority of Autism Speaks Move the Needle initiative.
In addition, school systems play important roles in the lives of children with autism. In “Interventions for Social Impairment at School: Rethinking Implementation,” Jill Locke, Ph.D., described a program to improve social engagement among school-aged children. Her presentation highlighted the challenges of conducting research in underserved communities. It also offered some pearls of wisdom, including the importance of partnering with schools throughout the process, identifying what is already working in schools and using local resources.
Another presentation, by Aubyn Stahmer, Ph.D., was titled “Implementation Strategies in Schools: What We Have Learned from Teachers.” Dr. Stahmer built on the notion of school engagement by describing an intervention developed for schools through a collaboration between teachers and researchers.
David Mandell, Sc.D., concluded the session with “Lessons from the Field; How Challenges from Effectiveness and Implementation Trials Can Inform Intervention and Study Design.” Dr. Mandell built on the theme of community involvement. He stressed that research must start in the community it is intended to serve and that tested interventions should include only the most essential of ingredients. The latter is important to avoid overwhelming a community’s limited resources. Lastly, interventions developed by researchers for use in the community should take a community’s unique characteristics into consideration, including its strengths.
As I write this, it strikes me that I, too, am a researcher. What I deem as integral to the success of implementing interventions for autism in underserved communities may differ from the advice from a parent, teacher or other stakeholder. What advice would you give researchers coming into your community to test a new intervention for autism? What do you think are the most important ingredients to making autism interventions for parents, school systems and the community successful? We’d love to hear from you in the comment section of this blog. Or send us an email at GotQuestions@autismspeaks.org. Thanks!
Editor’s note: Thanks to your support, Autism Speaks is currently funding a number of studies on improving autism diagnostics and treatments for underserved communities. You can explore these and other donor-supported research programs using our Grant Search engine.