At the International Meeting for Autism Research (IMFAR), Paul Shattuck, director of the Life Course Outcomes Research Program at Drexel University’s AJ Drexel Autism Institute, encouraged researchers to develop improvements for the quality of life of patients with autism.
Shattuck used the opportunity to urge academics, organizations and agencies to reconsider how autism research investments need to improve the patient’s quality of life.
“There have been many calls to ‘move the needle’ on adult outcomes,” he said. “But we still need to build the gauges to see if adult outcomes are truly improving over time.”
Shattuck is also a member of the Autism Speaks Family Services Committee.
Statistics show that young adults with autism are not benefitting from the large investments made in interventions and research. The National Autism Indicators Report shows that approximately 18,000 people who have autism participated in state-funded vocational rehabilitation programs throughout 2014. This figure is over twice as much as it was five years ago.
Unfortunately, of all the people participating in the programs, only 60 percent of them walked away with jobs. Of these, 80 percent worked solely in part-time positions, making a median wage of $160 each week -- which means they are still living below the poverty level.
“I don’t have all the answers,” Shattuck said. “But the fact that there are cries to move the needle on adult outcomes in the context of tiny outlays in support of adult research reminds me of a quote attributed to Henry Ford: ‘If you always do what you’ve always done, you’ll always get what you’ve always got.’ The only way we can move the needle on outcomes is to first move the needle on funding for a research agenda that prioritizes services and life course questions.”
