Guest post by Paul Shattuck and Anne Roux.
Dr. Shattuck and Ms. Roux just published an editorial on a landmark Autism Speaks-funded study on the economic costs of autism to families and society. Read more about this research - and their editorial - here.
Dr. Shattuck, director of the Life Course Outcomes program at the A.J. Drexel Autism Institute at Drexel University, is the recipient of an Autism Speaks research grant on “Factors Related to Young Adult Outcomes in Autism Spectrum Disorders.” Ms. Roux is the Life Course Program’s senior research coordinator. The program pursues large-scale research aimed at improving quality of life for people on the autism spectrum and their families. It does so by informing and assessing programs, policies and systems of care. The A.J. Drexel Autism Institute is the nation’s first autism research center organized around a public health science approach.
When families first receive an autism diagnosis, few contemplate how they’re about to become lifelong users of a complex service system. They just want to help their child, now.
Little do they realize that they are about to step onto a pathway with costs that can amount to millions of dollars across their child’s lifetime.
Our research on young adults with autism finds that poor outcomes remain common even though we, as a nation, spend billions of dollars a year on childhood interventions for autism. Of course, childhood services are essential. But we need to do a better job tracking what is being done with whom and with what impact.
Imagine if a large corporation tried to operate without financial statements. Imagine they gathered detailed data on each purchase and sale, but had no clear picture of overall company sales, expenditures, customer satisfaction or assets. The company would quickly go under.
Yet this is exactly how we run many of our programs for individuals with autism – lots of detail at the individual level coupled with a weak ability to pull that information together into an overview of benefits.
The time has come to focus and use this information to inform a new conversation about innovation and investment.
This begins with emphasizing, as a society, that people on the autism spectrum and their families are valuable members of our communities – with roles to play, dreams to achieve and contributions to make.
Delivering helpful services is often described as a “cost to society.” Yet, this phrasing neglects to acknowledge the nonfinancial social return on investment such services can produce. We need to better measure how helping people with autism and their families results in stronger communities.
In order to support more positive futures and strengthen our communities, we are pursuing four important next-steps:
1) Learn from innovations. Families, service providers and communities are experimenting with innovative solutions for employment, continued education and community living. Our job is to examine and learn from these innovations. What are people trying? What is working? For whom is it working?
2) Measure and measure again. We will not know whether we are moving the needle on problems if we don’t measure the right indicators at a societal level and check them repeatedly. Are people able to access needed services? What is the quality and impact of these services? Which programs work best?
3) Commit to life course research. Our understanding of heart disease is based in 70 years of evidence from the Framingham Heart Study and other long-term studies. We must plan large, ongoing studies for autism spectrum disorders – especially to track risks and outcomes into middle and later adulthood.
4) Train new scholars. We need to train new scholars with applied research skills who understand how to improve policies and programs in real-world settings. Ten years from now, maybe one of these new scholars will conduct a study titled "Return on investments in innovative practices for people affected by autism spectrum disorders."
Today’s services and research are in place because families took a stand and demanded help – successfully pushing beyond the status quo of their day. Families and people on the autism spectrum need to continue pushing beyond the status quo of poor adult outcomes. Improving adult outcomes will require families engaged as citizens and a historical shift to a mindset emphasizing investment, innovation and community contribution.
We want to thank the Autism Speaks community for supporting our work and our mission. Together we can make a difference.
For more on Dr. Shattuck’s studies supported by Autism Speaks, see Mounting Evidence of Critical Need for Adult Transition Support. Explore all the research Autism Speaks is funding using this website’s Grant Search.