A new study published this week in the journal JAMA Pediatrics put a price tag on the services for individuals with autism across their lifespan: from $1.4 million for those without intellectual disability to $2.4 million for those with both autism and intellectual disability.
Those numbers are staggeringly large. But Drexel researchers Paul Shattuck, PhD and Anne M. Roux note in an accompanying editorial in the journal that we don’t know nearly enough about how well it’s being spent on facilitating good outcomes and lifelong functioning and quality of life for adults on the autism spectrum.
Shattuck and Roux therefore call for a new conversation about innovation and investment in autism services and research.
As they detail both in their editorial and in more layman-friendly terms today in a guest post at Autism Speaks, thinking of services as a “cost to society” overlooks the nonfinancial return on investment that these services make in terms of quality of life and functioning communities. To better measure these outcomes, and to place a systematic emphasis on research across the lifespan that will support these outcomes, they propose four key steps for autism research:
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.”
Shattuck and Roux are both researchers in the A.J. Drexel Autism Institute, the nation’s first autism research center organized around a public health science approach. Shattuck, an associate professor with a secondary appointment in Drexel’s School of Public Health, leads the institute’s research program on life course outcomes. Roux is senior research coordinator for the program. Their research has included several major studies of life course outcomes in a large, nationally representative sample of young adults, including analyses that found poor outcomes in employment and independent living for young adults on the autism spectrum. Their plans for the future of the life course outcomes research program at Drexel follow the four key steps they they outline above.
Members of the news media interested in reaching Shattuck for interviews about autism and adult life course outcomes may contact me at firstname.lastname@example.org.
For more information about the A.J. Drexel Autism Institute, visit the institute’s website.