The Interagency Autism Coordinating Committee (IACC) held a two-day scientific workshop on September 30 and October 1 in Bethesda, Md., to discuss updating the 2009 IACC Strategic Plan for Autism Spectrum Disorder Research. The workshop covered the six questions in the 2009 IACC Strategic Plan, focusing on noted research gaps, new opportunities for advancing research and knowledge about autism spectrum disorders (ASD), and the prioritization of short-term and long-term objectives in the plan. Included in the meeting were panels comprised of clinicians, researchers, individuals with ASD and family members as well as the public and members of the IACC. The meeting agenda is available from the IACC website.
Tom Insel, M.D., Chair of the IACC, and Director of the National Institute of Mental Health (NIMH), opened the meeting with an update on the American Recovery and Reinvestment Act (ARRA) and its application to autism research. The stimulus plan, signed into law in February by President Obama, was designed to stimulate the economy, create and preserve jobs and advance biomedical research. In addition to NIH-wide programs (Challenge Grants and Grand Opportunities), the NIH issued a specific request for researchers to address the heterogeneity of ASD. Autism was the only health care condition to receive a disease-specific grant mechanism from the ARRA funds.
Dr. Insel reported that the special request for application for autism produced 590 proposals totaling $500 million. These applications were peer reviewed within six weeks (20 percent of the reviewers were public members) and approved by the NIMH Council on July 17. Final funding under this mechanism totaled more than $65 million. In addition, $20 million in autism research was approved and funded under the NIH-wide programs. The total commitment for autism research funded by the ARRA was more than $85 million. President Obama visited the NIH on September 30 to announce this funding. All NIH-funded grants can be found on the Research Portfolio Online Reporting Tool.
After the opening remarks, each panel was given 30 minutes to present their recommendations. A discussion among workshop panelists followed with public discussion at the end. This format was used for each question addressed in the Strategic Plan. A brief summary of their recommendations follows:
Panel 1: When should I be concerned?
The panel recommended the aspirational goal be revised to reflect efforts toward reliable detection of ASD at younger ages and through the lifespan. Screening tools should be developed and validated for a wider range of populations including younger children, adolescents and adults, and people with subtle characteristics. A broad-band developmental screening should be evaluated to identify ASD. Given the prevalence of co-occurring medical conditions with autism, the panel recommended methods for screening and diagnosis be developed. Barriers to the use of screening and diagnostic tools in ethnic minority populations and in community settings should be defined. Training programs for professionals should be developed and further evaluation is needed to determine whether diagnosis leads to intervention. Finally, the panel recommended addressing the wide range of ethical issues related to screening and diagnosis.
Panel 2: How can I understand what is happening?
The panel expressed concern that some research opportunities already included in the Strategic Plan had received little or no funding (e.g. brain and other tissue biobanks, studies of female brains, etc.). There is a significant need for studies to build the evidence base that informs treatment, services, and supports; they need to be translational. The panel also recommended improving efforts to effectively communicate current biology/risk factor research efforts to the autism community. As one public member put it, the priorities should be focused on resource development (brain banks, biomaterials, etc.), researching these samples, development of phenotypes or sub-groups and recognition of non-brain based studies. Another recommendation from the panel included setting a national strategy for collecting biomaterials and providing open access to interested researchers.
Panel 3: What caused this to happen and can this be prevented?
The panel noted that ongoing research is making progress toward identifying genetic and environmental risk factors, but could be enhanced by improvements in: 1) understanding of heterogeneity across ASDs; 2) coordination and communication across studies; 3) diagnostic tools, measures of exposures and their physiological and immune impact; 4) biobanking capabilities and standards; and 5) methods for investigating gene-environment interactions. The panel suggested that opportunities exist to better understand whether vaccines are a risk factor in some subgroups of ASDs. Finally, the panel recommended research results related to ASD risk factors should be consistently replicated and responsibly communicated when promoting translation into preventative strategies.
Panel 4: Which treatments and interventions will help?
The panel highlighted the following themes for treatments: 1) heterogeneity (need personalized interventions); 2) lifespan (need studies for adults); and 3) outcomes (need measures of function). A balance must be established between developing and testing novel, targeted interventions and evaluating current modestly helpful interventions. There is also a need for “personalized” information within large-scale randomized controlled trials. And finally, the panel addressed the need for a broad portfolio of treatments that provide actionable information about the range of interventions (medical, behavioral, technological) and policies.
Panel 5: Where can I turn for services and what does the future hold?
The last panel covered these two questions from the Strategic Plan. In terms of where to turn for services, they identified the lag between development of efficacious interventions, services, and supports from research to community settings as a key concern. Other recommendations included increased emphasis on quality of life, improved access to services and supports across the lifespan, systems collaboration and new models for service coordination, and application of principles of self-direction and self-determination. With respect to the future, the panel identified the following key issues: 1) inclusion of the full spectrum of adults with ASD; 2) the need to focus on principles of self-direction and self-determination; 3) the integration of programs for transitioning youth with focus on training and community integration; 4) use of medications in older populations; 5) access to adult services and 6) individualized, quality care.
The IACC Subcommittee for Planning the Annual Strategic Plan Updating Process, who hosted this two day meeting, will hold a conference call on October 15 to discuss the outcome of the this workshop.
The next full committee meeting of the IACC is scheduled for October 23 on the NIH Main Campus in Bethesda, Md. The agenda includes a presentation by a panel of parents of children with autism, a presentation on Applied Behavioral Analysis by Tony Charman, Ph.D., and discussion of recommendations for updating the IACC Strategic Plan for Autism Spectrum Disorders Research.
