By Anne Roux and Kyle Chvasta
If you want job security, don’t do the kind of work that the Policy Impact Project does.
Our job is to propel systems reform within the world of autism and developmental disability services research and connect that research to the places that matter, particularly the spaces that can enact policy change. Our work involves thinking about how people access the support they need, how they use the services they do have access to, and which barriers they encounter. Additionally, we consider and challenge issues like: how well-equipped providers are to deliver services; how the federal government and states fund services through little multi-billion dollars programs like Medicaid and Medicare; the laws and regulations that cover these services and programs; whether people are receiving the services, accommodations, and basic human rights that these laws mandate; and ultimately, the outcomes of these services and supports in improving the quality of people’s lives. These types of big, hairy policy-relevant questions are unusual in the world of autism research and even in broader-based policy research.
The question we often ask is, “Do autistic people have supports to successfully live, work and play how they would like to?” Sounds, maybe… important? Well, we think so. And if someday we are able to answer “Yes!,” we will put ourselves out of business. So, yeah, don’t do what we do if you want job security.
That said, if you want job security in autism research, you should definitely focus on biology. $51 million dollars was allocated to biological research regarding autism in 2017-2019 across three main federal funders– one third of the total funding allocated for autism research. In contrast, only $8 million was allocated for services research and $4 million was allocated for lifespan issues. [Fun fact… in 2017, lifespan issues received zero awards. Zero.]
For at least the last five years, the Interagency Autism Coordinating Committee – the federal interagency workgroup that advises on priorities for autism research funding – has been pointing to the glaring gaps in services research, lifespan research, and another area – dissemination, implementation, and policy-relevant research. And we’ve been holding up our brightly lit, neon signs saying, “Hey guys, that’s US! We’re over here trying to do this work! We need funding too!”
But here’s the reality. NIH funds the bulk of autism research. Only 9% of their funding goes to services research. And only 5.6% (of that 9%, people!) goes to policy-related research. That’s like…a tiny dot. (See the tiny red dot in the graphic? That’s us).
But, alas, no progress has been made with shifting the funding balance to enable us to produce research that informs the multi-billion-dollar public health and special education programs so badly in need of systems transformation. That’s what is called a wicked problem.
Recently, researchers who analyzed these funding gaps made an even more alarming point. If we somehow managed to increase services and lifespan research funding… BUT we didn’t achieve a parallel increase in focus on policy improvements…, would it even matter that we funded more services research? Wow. [Drop mic.] Excellent point.
Here’s the problem: the research we do essentially doesn’t matter if it’s not actually being used to inform policy and practice. You can invent the coolest [whatever] ever, but if people never hear about your invention, and it never makes it into stores where people can buy it, it might as well not have been invented. In business this is called a failure. In science, this is called the research-to-policy gap. The difference being – if a consumer doesn’t buy a product, a business loses money; if policymakers aren’t aware of critical research findings, people’s wellbeing is impacted. [Gulp].
Interventions and services designed to improve the lives of autistic people take about 15 years or more to go from a peer-reviewed study to a list of effective interventions, to a policy mechanism (such as a service that is included as something Medicaid will fund). 15 years. By the end of that 15-year cycle, the ways people are talking and thinking about interventions will likely have changed, and the expressed needs of the autistic community may have changed as well. Back to square one.
Maybe the slowness of the research-to-policy pipeline wouldn’t matter so much if autism was still considered a “rare disorder”. In the 1960’s it was, observed at a rate of 4 per 10,000 children. As of December 2021, the rate is somewhere around 1 in 44 children. Autism has proceeded from rare to common over the last 50 years. And the millions of autistic people living in the U.S. today, and people who support them, are hoping that research moves from the inaccessible space of an academic study into the practical spaces of practice and policy, and ultimately producing meaningful, positive change.
We talk about the need to “move the needle” on autism outcomes toward improving quality of autistic people’s lives. We hope and believe the needle is shifting, but it feels like it’s moving at a snail’s pace. People need access to services today. People should not be languishing on 10 year wait lists for adult supports. Service research – paired with dissemination activities and policy research – should be national public health funding priorities right now. Today.
Researchers should be directing their efforts toward answering questions that inform policy. Policymakers should know where they can look for answers. The needle will not pick up speed until these things happen. These are the kinds of challenges the Policy Impact Project addresses. And there is still endless work to be done.
If you want to learn more and become part of this conversation about the kind of work we think matters, follow us to stay connected and join the effort in moving that needle.
Cervantes, P. E., Matheis, M., Estabillo, J., Seag, D. E., Nelson, K. L., Peth-Pierce, R., … & Horwitz, S. M. (2021). Trends over a decade in NIH funding for autism spectrum disorder services research. Journal of Autism and Developmental Disorders, 51(8), 2751-2763.
Harris, L., Gilmore, D., Longo, A., & Hand, B. N. (2021). Patterns of US federal autism research funding during 2017–2019. Autism, 13623613211003430.