Collective Impact and the Adult Autism Research Agenda
by Anne Roux
September 17, 2015
Where can I turn for services? What does the future hold, particularly for adults? These are two key questions the federal Interagency Autism Coordinating Committee uses to guide discussion of autism research needs. Generally speaking, we know a lot more about where to turn for services compared to what the future holds for the 50,000 youth with autism who turn 18 every year. On the other hand, while we have truckloads of information about services for children, we only have a shopping cart of knowledge about how to help adults achieve even a decent quality of life.
Reviews of autism interventions and services in the U.S., notably the National Standards Project and the Centers for Medicare & Medicaid Services’ State of the States of Services and Supports for People with ASD, offer only a few examples of evidence-based interventions for this stage of life. The variability in the strengths, skills, and challenges faced by adults with autism makes it even more difficult to determine where to focus research to develop answers. John Elder Robison, a well-known autistic adult, shared his own thoughts with us about this topic.
But perhaps adult services research should also be built (and measured) around an entirely different set of questions – not simply about where to turn for services, but about what we want to achieve. What do we want our communities to look like in five or 10 years to better support adults with autism? How do we envision adults with autism being accepted and involved? Perhaps the answers have less to do with conjuring up more services and more to do with planning supportive environments.
Collective impact approaches (read more here or watch a video here) are designed to do exactly that. They bring community organizations together with those who are directly affected by the problem to improve health and well-being at the population level using a common agenda, activities, and measurement. Collective impact thinking has been used to address issues like readiness for kindergarten and the impact of diabetes in our cities, and to build community-wide roadmaps to health across our nation. Successes gained through creative community-based thinking benefit the entire community instead of only touching individuals.
So, what happens when you apply collective impact thinking to the big, hairy problems of transition into adulthood?
In May 2015, the Health Care Transition Research Network (HCTRN) on Autism Spectrum Disorders, which we are proud to co-lead, met for the first time to plan a research agenda with autistic adults and family members at the table. Many in the room had already tackled autism services research using traditional questions and methods. But this time, they tackled these same questions using ideas borrowed from a collective impact approach.
The excitement in that Washington, D.C. meeting room was palpable. But this energy was not because anyone suddenly knew the answers about what to study or how to help people. The excitement grew from a new sense of how to help communities devise and measure solutions to improve the lives of adults with autism as a population, thus improving the well-being of the entire community.
The HCTRN workgroup is only just beginning to put action plans together, but you will want to follow this developing story with us to see what happens.
Anne Roux, MPH, MA is a nationally renowned autism researcher, author and family advocate. She leads the production of our National Autism Indicators Report series and other publications.