Investing in Research for Today's Families

October 5, 2012

The answer to this week’s question comes from Nancy Jones, PhD, former director of Autism Speaks Autism Treatment Network and Clinical Projects; and Michael Rosanoff, MPH, Autism Speaks former associate director for public health research and scientific review.

How can we best invest research dollars to benefit today’s children and adults with autism?

Nancy Jones: One important area of investment is the development of high-quality treatments and their delivery to families and individuals with autism. Autism Speaks Autism Treatment Network (ATN) encompasses 17 treatment centers across the U.S. and Canada. The ATN is dedicated to improving the health of children and adolescents with autism spectrum disorders (ASD).

All ATN centers provide care for families today. Of course, it takes more than 17 centers to provide access to high-quality care for autism to all our communities. For this reason, the ATN’s mission includes the development of evidence-based standards of care. This includes “quality improvement,” an approach that answers such questions as:
* How do we know if families are getting access to care they need?

* What are the best ways to identify associated medical problems?

* What screening tests should be standard for all children with autism?

* Do screenings and treatments improve outcomes?

To be meaningful, this information must become available to both our families and the wide range of professionals who care for them. So the ATN supports local and national training. It has developed Autism Speaks tool kits for families and professionals. These tool kits provide practical guidance for health and behavioral issues that affect families every day.

This summer, Autism Speaks hosted its first National Conference for Families and Professionals. This is another way we are helping families today. Conference presentations and workshops included sessions on associated medical issues and the integration of behavioral and medical approaches across the lifespan. More than 400 families and professionals attended. They included physicians, nurses, psychologists and behavioral specialists.

Fortunately, Autism Speaks is not alone in making investments that improve lives today. We need support from both private and public funders. The U.S. Health Resources and Services Administration, for example, supports the ATN’s quality improvement approach and its tool kit development and training activities, as well as clinical research at ATN centers. It does so through the Autism Intervention Research Network for Physical Health (AIR-P) collaborative agreement grant. AIR-P research focuses on autism-related physical health issues such as sleep, GI, neurological and metabolic disorders. It’s essential for evaluating the effectiveness of treatments and developing more targeted treatments.

Michael Rosanoff: In 2008 Autism Speaks launched the Global Autism Public Health Initiative (GAPH) to promote global autism awareness, research and services. Since then, we’ve invested in collaborations in 35 countries. Our GAPH efforts are delivering immediate and meaningful benefits to families around the world. These projects are particularly important to those in underserved communities – here in North America as well as abroad.

Public health research allows investigators to measure the magnitude of a health problem and evaluate access to services. For example, determining the prevalence of autism and the cost of autism to society furthers the work of advocacy and health policy reform. We’ve seen this in North America. It’s likewise proving true internationally.

To date, most autism research has taken place in select communities in developed nations. We know little about autism’s occurrence and treatment in disadvantaged regions. By working internationally, we can deepen our understanding of autism and its causes, while helping communities with autism screening and services. In addition, our international work helps reduce stigma as it raises global autism awareness. This increased awareness has direct and immediate benefits for local communities. For example, it can empower our families abroad to advocate for services as well as basic human rights.

Studying autism in different cultures and resources provides other opportunities as well. For example, it allows us to develop and test simpler and less costly methods for delivering screening and treatment. This is so important in places facing shortages of trained specialists.

We can also test existing practices in a variety of settings and test innovative strategies such as using the Internet to deliver services remotely. We expect the results of these research projects to deliver benefits to underserved populations today and long into the future. 

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