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Tightening the link between autism research and quality of life

Today at IMFAR, Paul Shattuck challenged scientists and their funders to rethink how we ensure that autism research is improving lives
May 13, 2016

Today at the International Meeting for Autism Research (IMFAR), keynote speaker Paul Shattuck challenged his fellow academics – and the agencies and organizations that fund them – to rethink how they ensure that record-setting investments in autism research are improving lives across the lifespan.

Dr. Shattuck is the director of the Life Course Outcomes Research Program of Drexel University’s A.J. Drexel Autism Institute, in Philadelphia. Dr. Shattuck is also a member of the Autism Speaks Family Services Committee.

“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.”

By what few measures are available, he said, it appears that, overall, young adults on the autism spectrum are doing poorly despite historic expenditures into research and interventions.

By way of example, Dr. Shattuck noted the “National Autism Indicators Report” that his team released earlier this month. (Autism Speaks Vice President of Adult Services Leslie Long served on the report’s advisory panel.)

The report found that nearly 18,000 people with autism used state-funded vocational rehabilitation programs in 2014, more than double the number five years earlier. But only 60 percent of these people left the program with a job. And 80 percent of these worked just part-time at a median weekly rate of $160, putting them well below the poverty level.

In part, he proposed, we’re doing so poorly in supporting the transition to adulthood because such a thin sliver of autism research funding is going toward lifespan issues such as developing effective supports to improve success in employment and community integration.

The recent “Portfolio Analysis Report,” by the Interagency Autism Coordinating Committee (IACC) put that sliver at just 1 percent of total autism research expenditures in 2012, Dr. Shattuck noted. (See graphic below.) 

“I don’t have all the answers,” he 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.”

Adding to the urgency, Dr. Shattuck said, the Workforce Innovation and Opportunity Act, passed last year, requires all states to dedicate at least 15 percent of their vocational rehabilitation budgets to programs for transition-age youth (teens and young adults).

“So here we are embarking on a huge policy experiment, with state governments spending huge amounts of money, but with little guidance and no plan for measuring whether any of this effort is having the desired impact of improving to lives,” he warned.

The solutions must go beyond traditional academic research, Dr. Shattuck warned. “It takes a lot of outreach with legislators and their staffers, on both state and federal levels,” he said. “It’s not the kind of effort that is traditionally valued in academia with our culture of peer-reviewed journals as the way to impress other academics.”

At the same time, he noted that his team’s 2015 “National Autism Indicators Report: Transition into young adulthood” was selected by the IACC as one of the most influential papers of the year. “That helps counter critics who say that the applied indicators work we’re doing isn’t real science that merits funding.”

In conclusion, Dr. Shattuck noted that when he started his career in the field of autism research in the 1990s, it was “a tiny field” but one where a small handful of research and advocacy organizations were making a strategic effort to get researchers to turn their attention to neglected areas of research. “I think what we need is a return to such a big vision strategy on the funding side to incentivize work in the vital area of lifespan issues.”

Autism Speaks has funded and continues to fund lifespan research and support programs, including work by Dr. Shattuck. To learn more about these programs, also see:

* More than $3 million in grant funding for services for adults who have autism

*, a jobs portal for adults with autism

* Building Independent Lives through Training (BILT), an online course for those who support the daily living needs of adults with autism

* The Autism Speaks Employment Tool Kit, Housing and Residential Supports Tool Kit, Adult Diagnosis Tool Kit and Transition Tool Kit

* Housing and Community Living Initiative to increase access to home and community-based services 

Follow all our IMFAR coverage here.

View photos from IMFAR 2016 below.